Monday, June 9, 2008

A Day In the Life of Gavin (Part II)


Giving a little smile!, Wearing brother's coon hat!, Looking sleepy and cute!


Taking a rest!


In the last post I forgot to update everyone on Gavin's feeding routine. Of all the things I'm asked about Gavin, this is probably the one that tops the list. So, here you go.....Gavin is still only being fed through his G-tube. This is the tube that was surgically placed directly into his stomach. He is fed Pediasure. He is still unable to have liquids since they are too thin and end up going into his lungs. He is allowed pureed foods, but has a very hard time with them! The feeding tube has been such a blessing! It allows Gavin to not have a tube up his nose or down his mouth and it makes for giving his many medications very easy. He doesn't have to taste them and they go down a whole lot easier this way! And, obviously, the tube also gives him the nutrition he needs to survive! I struggle a lot with not being able to feed him by mouth, especially not being able to give him a bottle. He was able to have a bottle early on in life, but we found out that he was aspirating the liquids into his lungs. This probably attributed to the severe case of pneumonia that he had. When he did drink from a bottle, he did not have a very strong suck, but he really enjoyed it. After having a ventilator tube down his throat for months, he did not want ANYTHING in his mouth! This is why he struggles so much with eating any foods by mouth. Add that to having had a stroke and feeding by mouth is just NOT an fun thing for Gavin! Poor little guy! It's something that I struggle with daily. I wish he would want to eat by mouth, but I understand why he wouldn't want to. I know that I need to keep working on this with him, but I hate to watch him suffer so much when I try to. He gets so upset! He gags and sputters so much, that I usually just give up. So, who knows if he EVER will tolerate this? It's something I pray about.

Gavin is hooked up to a feeding pump for about 16 hours each day. We have it running all night long, at 1 1/2 ounces per hour. During the day and evening hours we disconnect the pump in 2-3 hour increments, totaling 8 hours, that he is off the pump each day. In some ways this makes life difficult, but in other ways it makes it easier. It's more difficult, because it's hard to carry Gavin around along with his pump. For one, he's an arm load already! And two, there is a risk of pulling out his tube if we trip on it or something. It's easier, because we just have to fill the bag up with Pediasure and the pump does the rest for us! Although, I'd trade the easy part any day, if that meant Gavin could or would eat by mouth! I'm holding out, hoping this will change some day.

Another thing that I'm asked a lot is whether Gavin is crawling yet. The answer is No, not even close! He doesn't even roll over! This may be our answer forever, due to the stroke he had, but I'm holding out hope for this one day as well. That's all we have with Gavin.....Hope. We would drive ourselves nuts if we worried all the time or if we thought we could change any of this ourselves. We are not in control! Because we aren't the ones in control, we are able to have Hope!

Gavin is FINALLY getting some teeth! We were beginning to wonder if he had any in that mouth of his. His P.T. told me that children with Down syndrome usually get them later, plus he doesn't chew on anything, so they haven't had any help breaking through the gums. But, they are definately in there and making their way through.

Now you know what Gavin's day consists of. He is very dependent on us. He would not be alive today had he not had so many surgeries. He would not be alive today if he did not have a feeding tube. He would not be able to do much of anything if he didn't have us around to care for him. He depends on others for everything! This is sad, but true. Gavin's dependency on others is obvious. There is no doubt that he would not be here today without depending on someone else! But, as I was so fortunately reminded by Joel's Aunt; Aren't we all very dependent on Someone?! We ALL are dependent, we just don't see it as clearly as we do with Gavin and others like him. We ALL stand in need of God's help. We may think we are doing a pretty good job in our life on our own, but we must all remember WHO gave us this life! We are mere humans, capable of nothing without God's power and grace! Some days I think to myself, "Gavin's got it made!" He may be dependent on someone for everything, but at least he's not thinking that he can control his world. May we all remember that we, too, are dependent on Someone for everything and that we should trust THAT Someone with our everything!!! Thank you Lord for this knowledge and the Hope that comes from having it! AMEN!



"Trust in the Lord with all your heart, and lean not on your own understanding; In all your ways acknowledge Him, and He shall direct your paths." Proverbs 3:5

6 comments:

Cathy said...

Alicia, I am Annabel's mom and I saw were you commented on her blog. Thank you very much for visiting, as I know how precious your time is. I have also been following Gavin site, its on my favorites. Don't know who shared it, but I found it and was touched by all the love in your family. The reminder of how dependent we all are was nice. I am reminded when you spoke of GAvin and his dependance on you, that we are their everything (God of course who gives us all we need). With Annabel she doesn't sit, stand, crawl, walk or turnover. In the night we turn her several time from side to side. She doesn't like her tummy. Somedays I feel like I am her total source of entertainment. I feel guilty if I do too much household things or have too many errands. You have a very beautiful family and are SO blessed.

ruehshouse said...

Alicia-

Everytime I'm feeling down I can read your blog and feel better. You always have such a positive outlook and you are so right--we are all dependent on someone. Gavin is so lucky to have you and Joel and his brothers. He wouldnt be who he is today without you. We definitly have to get together and visit soon. I wanted to talk to you more on sunday but there where to many people and I know everyone was so excited to see Gavin.

Love ya lots--April

Jessica mommy to Alex/ RTS said...

What a strong momma you are, even when youdont feel like it, you are so strong, and your love for Gavin shows, even through the words you type on this blog. Everyday, we do waht we have to do for theselittle guys, sometimes if feels like its not enough, and we have other children who need us. What a calling we have been given.
You are doing a great job!

The VW's said...

Cathy,

Thank you for visiting! It sounds like you are kept quite busy with your little miracle as well?! I agree with you on being their only sense of entertainment. I feel quite guilty when I leave Gavin for long to do something else, since I know he isn't able to do anything on his own. I try to give him lots of attention and hugs each day since this probably is his only joy in life. Lots of other things get neglected it seems, but that's OK. Annabel is very blessed to have you as her family! I'll be keeping you in my thoughts and prayers!

Love, Alicia


April,

You guys can come visit whenever you want! Gavin may be blessed to have us, but I'd say WE are more blessed to have HIM! Thanks for your love and support!

Love, Alicia

Jessica,

Thanks for your kind words, but trust me, I have bad days too! I just try to look for the positive and there's a whole lot more good than bad when you are looking for it! I think of your family often and hope for the best for you and Alex!

Love, Alicia

Tamara said...

Thank you for the reminder! Wow isn't it wonderful when God uses our little gems to show us such profound insite! Thanks Gavin!!!!

The VW's said...

Tamara,

We definately do learn a lot by having them, don't we?! Give hugs to your little gem for me!

Alicia