Gavin is doing a little better with the gagging issue, but still has problems with it throughout the day. We saw the surgeon who did his G-tube surgery this week. He told us that this may stop and it may not. There isn't much that can be done. He said there is a medicine to help with it, but not here in the U.S. Hopefully it will get better on it's own after time.
Gavin is off oxygen all day long now and seems to be doing well with this. He has it on at night and he sure does complain when it's time to put it back on! Hopefully his echo shows that he can be off it for good soon! His pulmonologist wants to do a sleep study with Gavin off the O2 before we take him off completely. He wants to make sure that he doesn't desat during the night first. I pray that these tests show that Gavin is ready to be off because he thinks he's ready! He yells at me when I put it back on and continues to try to pull it off his face through the night. Half the time I check on him to find it pulled out, so I don't know how good it's doing anyway!
Bootcamp is going OK, but I don't see much progress with him. He is getting better head control and seems stronger, but like everything with Gavin it is taking longer than I would like! I really need to relax because Gavin has 2 strikes against him. He has been hospitalized for so long and he has Down Syndrome. I don't know why I think he should be progressing faster. I guess because I'm used to it happening naturally with our other children. We have to really work for Gavin to develop. Some days this bothers me because I feel like there is such a long road ahead! We don't even know how far Gavin will get developmentally. Other days I feel up to the challenge and work him hard! I just try to take it one day at a time and trust that God will get us through.
I tried feeding Gavin babyfood again today. He did not like it at all! He isn't used to having anything in his mouth and what has been in there, like the vent tube, wasn't pleasant. So, this will be another challenge for him. We will have to keep trying and hope that he changes his mind because we don't want him to have to get nutrition from the tube forever.
Hope you all had a great 4th of July! We were able to take the older boys out to fireworks! Grandma and Grandpa O. offered to watch Gavin. It was great getting out with the boys for some fun again!
Thanks for your continued prayers!
Love, Alicia and Family
4 comments:
You said it perfectly...just take it one day at a time. Gavin will work at his pace, but he WILL get there! Just keep at it like I know you will and everything will work out in time.
I pray that his gagging gets better...how sad that little sound is! *sniff*
I love and miss you all!
xoxo Aunt Amy
It's hard for you to see the progress, Alicia, because you're inside of it all, but as I read the postings, I can see progress!
Just think--a few months ago you wouldn't have even been able to leave Gavin with anyone to go see fireworks! And now you're giving him real food! (He'll start to like it eventually.)
Gavin's gotten off to a difficult start, and it's easy to get frustrated because it does seem to take such a long time to see progress, but you will. And God will give you all what you need along the way to endure.
Love,
Annette
Alisha - Have you contacted Early Intervention yet? Then he can start being seen by PT and OT's. An Occupational Therapist can get him to eat real food eventually - they can desensitize him. It takes time, be patient. Remember he is still gaining his strength back. Just everyday living probably wears him out. He will get there just not on ANYONES time table. You have to let go of unrealistic dreams and hang on to small goals. I know: my Aidan just turned 5. Alicia my son does not walk, talk, can't tell you what he needs or wants, still wears diapers, has to be carried everywhere/or wheelchaired, he can't see and now he has some hearing problems as well. And cognitively he may never advance.
I'm sorry this sounds so harsh, but what you are going through is grief and the realization that your child is different and not like your others. It will take some time and you will be angry. Its okay - I still get angry and sad. You will eventually embrace Gavin for who he is and celebrate every small victory he makes and that WILL make you happy! All you have to do for Gavin is LOVE him, and be the one person that is his constant. The one person in the whole world that loves him for who he is - despite anything else he ever does that is what he needs you to be. Essentially you are SUPER MOMMY, but if one kid in this whole world loves you as unconditionally as Gavin isn't that what its all about. You will ALWAYS be there for him when the world will reject him, stare at him, be cruel to him, NOT care about him and that is worth more than anything else. So if you are not the one to help him progress physically, just remember he will KNOW you are his rock and he can trust you.
Aidan doesn't do well when I try to do therapy with him, because I am his MOM and he knows I am the one person in this world that loves him despite all else and that's enough for me. So if he never progresses to walking or talking sure I will be sad/heartbroken, but I will still love him, kiss him, hug him and tell him how much he means to me and that is truly all he needs.
Keep your chin up - its hard when you are in the day to day struggle of it. There will be brighter days, you've already seen some AKA - Gavin's Smile.
Love,
Melissa Hamilton
Hey Alicia,
He really is beautiful.
The Doty girls are all pulling for you.
Love,
Aunt Millie
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