Friday, October 29, 2010

point of view

yay!! gavin qualified for ddd (developmental disability). this means that g will be receiving services in our home instead of having to travel to them. these services include physical therapy, speech therapy (they work on feeding goals), and we also get a developmental service coordinator. these three people will come to our house both separately and sometimes together to work with gavin. that's three hours of services each week! praise God! i am so confident that gavin will continue to make progress as we move forward! he's such a rock star. at our meeting on monday, i received a packet of papers for gavin. if there's one thing i have discovered in this process, it's paperwork, paperwork, paperwork......oh, and PHONECALLS! I have taken on a "browse" type approach to the what i deem the "unnecessary fillers" in each of the packets we receive. however, one paper caught my attention this week. it was titled, "welcome to holland". for all of you wondering what it has been like mourning the loss of what "we had originally planned" for ourselves, this article written by a parent in our shoes perfectly depicts what it is like. because as i sit here today......our life is perfect.........just as He had planned it to be.

Welcome to Holland
By: Emily Perl Kingsley

I am often asked to describe the experience of raising a child with special needs-to try to help people who have not shared that unique experience to understand it. To imagine how it would's like this..........

When you're going to have a baby, its like planning a fabulous vacation trip-to Italy. You buy a bunch of guide books and make wonderful plans. The Coliseum, Michelangelo's David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean Holland?? I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you'll stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you must meet a whole new group of people you never would have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for awhile and you catch your breath, you look around and you begin to notice that Holland has a lot to offer. Holland has windmills.....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy.....and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say in your head, "Yes.....I know how great Italy is. I had planned to go there too."

And the pain of that will never, ever, ever, ever go away.......because the loss of that dream is a VERY significant loss. But.......if you spend the rest of your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, very wonderful things.......about Holland.

i just loved that!!! i think it is a great picture of where i am at, personally. gavin is a miracle.....nothing short of it. there is not a doubt in my mind that he will continue to get stronger and stronger. i have faith in a very big God to get us there. however, i know that the road to getting him there is a long one. it is a road that is filled with appointments, therapies, and possible surgeries. my job as his mommy is to do EVERYTHING i can to get as much support for him! the earlier the better! that's exactly what we are doing. and we will continue to do it.....

we, as always appreciate your prayers. and honestly........i ask sincererly for sensitivity. we have very fragile moments. this has been a very tough time for us. although we LOVE our son more than words could ever describe and although we have grown accustomed to this "way of life", we are still mourning the loss of what many consider as "typical" and "normal". thank you for loving on us during our sad days and rejoicing with us during the happy ones. lately, there have been more happy ones. i'd say that's a pretty good thing :)

all my love,

ps. the boys taking a snooze...

Friday, October 1, 2010

it's a new month

we made it out of september. i celebrated my 32nd birthday on the 28th with family (at home) as we continue to work to get gavin healthy. since i wrote last, gavin had to be taken to the ER last sunday night because he was choking and couldn't seem to catch his breath. gavin has a feeding tube in his nose right now to help his lungs heal because he had been aspirating all of his feeds. basically every time he would swallow his food would end up in his lungs making it that much more difficult for his lungs to heal! as part of his cares, we are to check his tube placement in his stomach by measuring it from his nostril and listening to his belly with a stethoscope by injecting a small amount of air. well...gavin was experiencing some bad gas and was very uncomfortable so i injected some gripe water (designed to relieve colic and upset stomach) into his tube without thinking to check. within a minute or two of giving it to him, he started to sputter and choke and we had to immediately pull his feeding tube. once he started to settle down, we had  a nurse friend of ours come by and re-insert a new tube. everything seemed to be ok until his feed about 11:30pm. within a few minutes of feeding him through his tube he began thrashing and was visibly agitated. we quickly pulled his tube again and gathered everything together - got him in the car and headed to the ER. we now keep a bag ready to go at all times so we can head out the door quickly if we need to.  not what we want to do but we've learned!
i prayed that God would go before us and help us with the right dr.'s, nurses, etc. we got him in, checked him out, took an xray and then had him admitted overnight for observation. he was up to 2 liters on his oxygen at the time we brought him in.
thankfully, gavin didn't have to be IV'd or any blood drawn for this stay! however, he had a very rough night as they didn't re-insert his feeding tube until morning and he just cried all night with tracee because he was hungry. i didn't experience that part as i went home about 3am. poor guy! poor tracee!  important note: the PICU sent us home with the wrong tubes for gavin's feeds - so the one that we had re-inserted at home was causing him agitation. doesn't that just fit our journey?? we were upset with the PICU staff that didn't have the knowledge to know that what they gave us for gavin isn't what is to be used.
we were able to take him home on monday afternoon and he had been weaned down to 1.5 liters at time of discharge. before we left on monday, our pulmonologist took a sinus xray to double check what was going on for gavin. within a few hours of getting him home monday we had him turned up to 2 liters again. it just didn't make sense how he was doing so well at the hospital and now was struggling again at home?
we got a call on tuesday to determine that gavin had a sinus infection! the radiologist who looked at his sinus xray determined that his maxilary glands were either so blocked up that they couldn't be seen or they were extremely under developed. they called in a 10 day antibiotic for gavin and he has been on it now for 3 doses.  during this time tracee and i have been suctioning out all kinds of gunk that saddens our hearts because we know how hard it must be for gavin to breathe with this in the way, and his weakened lungs.
i am attaching an email dialogue i had yesterday with some dear family friends regarding this:
Hi Jeramy and Tracee,

This morning in my devotions I came across this verse in Romans and I had to share it with you.

Romans 15:30 - "I urge you, brothers, by our Lord Jesus Christ and by the love of the Spirit, to join me in my struggle by praying to God for me." The footnote says - "Prayer is...a weapon in all believers' armor as we intercede for others who join in the fight against Satan." I could also add....In the fight against weakness, against discouragement, against worry, against anxiety, against exhaustion, etc., etc. Whatever the struggles are, Gene and I stand with you in prayer.

Our small group Bible study meets on Wednesday nights. It's an awesome group of mature Christians. We have all been praying for Gavin's development, and your stamina and spirits. Know that you are loved and supported. May God use you as a tremendous witness to the whole hospital staff as they watch how you deal with all of this stress. I pray for God's supernatural strength when you just don't think you can go on.
With our love,
          Gene and Norma

Here was my response:


I have tears in my eyes right now as I read this. I am feeling a little under the weather today. Fatigue for Tracee and I is an understatement. Nevertheless, we continue to push on. Thank you for the prayers for me and my family. They are so coveted and so necessary with the turmoil we continue to endure.

Gavin has a sinus infection right now that has really been taking its toll. You just can’t imagine the pain it brings Tracee and I to have to perform various medical procedures (like power suctioning his nose and mouth) when he just cries and struggles to breathe and looks at us with fear in his eyes like “why are you doing this to me???”

I often put myself in Gavin’s position and God is us and I’m crying and asking: Why are you doing this to me?”

Thank you so much for your donation to Gavin’s account – we so appreciate it and know that it goes to providing for his needs and the continued unexpected turns we take with his health care.

I feel encouraged hearing that there are people out there praying for us by name and lifting us up. There’s a battle that rages on and the spiritual warfare that we are experiencing is real and rough. The nights are hard – Gavin usually has his toughest times on nights and weekends when most of our life lines are unavailable.

Thank you to you guys – we love your hearts for us!!
this morning it felt as if gavin was starting to feel some relief from this infection. "let the morning bring me word of Your unfailing love for i have put my trust in You." amen. we are looking forward to being on the other side of this sickness and for him to feel better and not have to work so hard. tracee and i continue to focus on being thankful for each other and for gavin. i hope this update finds you all blessed and well. thank you for helping lift our hands up to God during this time like the people did with moses.
one final thought: i loved reading the comments from the last post as so many of you shared how this blog was passed along to you from someone else and how groups of you lift us up in prayer along the way. that is so encouraging! it overjoys our hearts to know that and it seems to help ease the burden in some supernatural way.