Friday, September 14, 2007

I came to the realization a couple of days ago, after talking with the NP at Gavin's neurologist office, that I've been kidding myself. I've held such hope for Gavin's future! I still hold onto hope, but it's not so high anymore. I was told that the EEG showed that he was having less seizures, but that there was still significant swelling on his brain. I was also told that the seizures and delay in Gavin all stem from the "injury" to Gavin's brain back in April when he became severely dehydrated. I was also told this would be a life-long struggle, with at least a couple of seizure meds needed to be taken. This is the good outcome. If they can't control Gavin's seizures with an anti-seizure med, the next step might be to give him steroid injections. We could handle this, except that the price of this treatment is VERY high! Some of you may have read a story in the G.R. press about a month ago about a child that has been using this treatment. At one time the cost of this was around $2500 a month. Now it costs $25,000 a month! Ridiculous!!! This might not even be needed for Gavin, but just the thought of it scares me!

I have been crying a lot over the last couple of days. Coming to this realization and just coming to terms with the last year has made me very emotional! When I think back to all that Gavin has been through! It breaks my heart! I've also been feeling guilty that I let the hospital do some of this to Gavin! I feel I should have been more authoritative with them and not allowed them to give Gavin such high doses of such a powerful dieuretic! I told them that I thought it was too much and I told them that I thought he was dehydrated, but I should have yelled and stomped my feet until they listened to me! Instead I trusted them and their knowledge. I know that I can't beat myself up for this, but it's hard not to. I also know that there is a reason for everything and that God has a plan for Gavin. Sweet, precious Gavin! I called to talk to someone at the patient relations department again concerning what happened back in April. I told them that I needed concrete evidence that something was done and that this won't happen again to someone else! I even offered to talk with incoming residents, though I'm deathly afraid of speaking in public, about listening to patients and their family members. I feel listening, communicating and really knowing your patient would prevent things like this from happening. Who knows what will come of this, but I know that I need to be proactive about this to get over this guilty feeling and to make some sense of why it happened.

Another thing I've been thinking about is how much responsibility I have with Gavin. I know that God holds Gavin in His mighty hands, but essentially I hold Gavin's life in mine too! I have to read Gavin daily and know when to call about something and I need to keep after the doctors to make sure they are aware of things. He has so many meds and doctors! It's hard to make sure all of them are working together. Please pray for me that I can keep a clear mind and not worry about this responsibility. Please pray for our other children too. I want them to feel like they are well taken care of and loved too! Please continue to pray that Gavin's seizures will be under control and that the swelling in his brain goes down.

Thanks for your continued prayers and support! Thanks also to those of you who have generously donated to the Down syndrome association! Their assistance to families is greatly needed!

Also, I wanted to let you know that the car seat problem has been cleared up for now. When Gavin grows bigger I may need more ideas, but I REALLY appreciate everyone's help!

Have great weekend! We plan on it.....Someone we know is turning one year old!

Love, Alicia and Family

5 comments:

Rachel Doty said...

Alicia, Gavin, and all the other VW's I love so much,

First of all, HAPPY 1ST BIRTHDAY Gavin!!! I hope to come see your squishy little butt soon and celebrate with the fam. I love you!

Second, Alicia...my older, wiser sister. I am amazed by you every day. Even when I don't see you or talk to you...you are in my mind and thoughts and it is always a thought of pride. I am so proud of you and all you have learned about life, faith, family, and yourself thoughout this journey of the past year. In reading your postings, I know that not much this past year has been easy for you or your family. I hope every day that things get better and easier.

You have always had Gavin's best interest at heart and we who know you, know you have done everything in your power to get him the best care. I hope that you are able to move past beating yourself up for not "throwing a fit" in April, and continue your already amazing efforts to help other patients and families that are going though similar situations. You can't change the past, but I know you well enough to know that you are DEFINITELY changing the future.

The other thing that I wanted to tell you is that I KNOW! that Jacob, Nolan, and Caleb feel loved and well taken care of! They have fantastic parents in you and Joel and it is clear they are happy little boys! I don't know how much longer I can call them little boys...they are all getting so BIG!

I will definitely be up in the next month or so to visit all of you. Please give everyone hugs, kisses, and love from me! I love you, Rachel

Annette Selden said...

Dear Alicia,

It has been such a difficult year for all of you. What a way to begin life for Gavin! And my heart breaks for you for all of the struggles you have faced so courageously.

And I wouldn't begin to try to tell you how to think "victoriously" about all of what has happened because I haven't exactly walked in your shoes and don't know what my own responses would be in your situation. I will pray, though, that you will not be so hard on yourself and not blame yourself for some of the things that have happened in the course of Gavin's treatment. You and Joel are loving parents who are faithful to God, and I know that you have been motivated only by love for your son and for God. We needn't ever be sorry or have any regrets for that.

I hope these thoughts from one of our authors will encourage you--even a little. These are the truths she suggests we remind ourselves of:

"* Yes, I hurt, but I will not hurt forever.
*Even pain has a beginning, middle, and an end.
*I will survive.
*God does care.
*Some of God's people know how to comfort me.
*Even if this is my fault [and none of this is, Alicia], beating myself won't help.
*God loves me tenderly when I'm hurting.
*I can't see it through these tears, but God does have a future for me [and Gavin].
*Morning will come."

Our family continues to pray for all of you, dear Alicia, and this week especially we've been giving thanks for the year of life God has given to Gavin. God's work is never in vain, and His gift of life to Gavin is a good gift--He gives only good gifts, even if it's hard for us to see the goodness of them sometimes. Happy birthday to him--and to all of you.

Love,
Annette

Amy said...

I honestly don't know if I can fully express to you how much you amaze me, Alicia. You have always been like a second mom to me, someone I was always able to come to, knowing you would give me the most caring and truthful advice and unwavering support. You've always made me so proud, but now you've moved to a new level that leaves me in awe of all you've been able to handle and do - all while continually keeping a strong faith and motivating others to do the same (and making a clear difference in the lives of your entire family!).

I can only imagine how hard it must be some days to not beat yourself up, to not lose faith in YOU... Yet you still continue to amaze us all with your strength and resolution. If you ONLY KNEW what we all see when we look at you, Alicia! Our little sis said it perfectly! I'll just add that I honestly believe if it weren't for you and the strong fight you led while Gavin was in the hospital, I don't think he'd be here with us today - a year later - doing as well as he IS doing! So as much as you'd like to go back and stomp your feet a little louder, I know without a doubt you already HAVE changed the future. We have that precious little boy with us. And along with Gavin's Voice, you've certainly found a new and loud voice of your own - despite all the adversity. Like I said, you AMAZE me, and I don't see that stopping anytime soon... :o) ((((HUGS))))

Happy Birthday, Gavin! WE LOVE YOU!!

Julie said...

Oh sweet girl, you have had such a hard year. Gavin, Jacob, Nolan & Caleb are the luckiest boys in the world to have you and Joel as parents. As for feeling loved, that is a given, but above feeling loved they are learning so many essential life lessons from your journey with Gavin's illness. You are teaching them the TRUE meaning of unconditional love not only for your family but that of which you receive from God. You are teaching them patience, understanding, hope, courage, and boundless devotion. You are a hero of the human spirit. I envy your capacity for love and faith as it is truly amazing!! There isn't a single day that goes by that I'm not amazed by you, or not inspired by you.
With more love & admiration than words could describe,
Julie

connie said...

Just read this older post tonight, and I wanted you to know I"m thinking about you.
connie