Friday, April 27, 2012
Bucket List
I know we all have a "Bucket List" for ourselves and maybe even for our children. But what would you want to do if you were suddenly told that you only had another year or so to live. What would you do if you were told this news about your precious new baby. This is exactly what has happened to a precious little girl Avery. I hope that everyone helps to fulfill the number one thing on her bucket list, to share her story and tell others about the genetic syndrome, SMA, that she has. I hope that everyone who reads this will visit her blog http://averycan.blogspot.com/ and help her to spread the word because this could happen to anyone.
Thursday, April 19, 2012
One of Tripps biggest accomplishments :)
Even though it has only been 8 days since I have posted last alot has happened in those 8 days.
Monday, we went for Tripps preop visit for his cleft palate surgery. They are also going to be putting ear tubes in and then doing an abr while he is under. We did get some great news (great to me) at the appointment. Since Tripp's cleft is so far back he is not going to make him wear no nos! He had to wear them for a short time after his 2nd jaw distraction and they were horrible, he hated them and just cried the whole time. Since it is so far back there is no way he will get his finger back there, he just is not allowed to have a straw, a paci, or anything long that could get back there to hurt the palate repair.
The next thing is what I consider to be Tripp's biggest accomplishment yet, today is the 2nd day is a row that he has not had any tube feedings!! For us this is awesome news and just shows me that whenever I am ready to give up on it he can show me who is boss. I say this because he had improved but was still not drinking what he should be. So, I did a ton of research and found a more aggressive weaning plan that both Ricky and I were comfortable with. I emailed Tripp's GI doctor about what was going on and the plan Wed. morning, well I guess it doesn't really matter what he thinks about that plan now! God is good :)
Monday, we went for Tripps preop visit for his cleft palate surgery. They are also going to be putting ear tubes in and then doing an abr while he is under. We did get some great news (great to me) at the appointment. Since Tripp's cleft is so far back he is not going to make him wear no nos! He had to wear them for a short time after his 2nd jaw distraction and they were horrible, he hated them and just cried the whole time. Since it is so far back there is no way he will get his finger back there, he just is not allowed to have a straw, a paci, or anything long that could get back there to hurt the palate repair.
The next thing is what I consider to be Tripp's biggest accomplishment yet, today is the 2nd day is a row that he has not had any tube feedings!! For us this is awesome news and just shows me that whenever I am ready to give up on it he can show me who is boss. I say this because he had improved but was still not drinking what he should be. So, I did a ton of research and found a more aggressive weaning plan that both Ricky and I were comfortable with. I emailed Tripp's GI doctor about what was going on and the plan Wed. morning, well I guess it doesn't really matter what he thinks about that plan now! God is good :)
Wednesday, April 11, 2012
11 months old
Today Tripp is 11 months old! He has had a rough month of battling the ear infection that was found last month. He took 3 different antibiotics and the doctor finally gave him an antibiotic in a shot and this has seemed to clear it up. He hasn't gained much weight because he hasn't been eating as much as usual where he wasn't feeling well, but he hasn't lost weight either so that was really good.
He is continuing to learn new things despite not feeling well. He is pulling himself up to standing, and starting to cruise around the furniture. He is also eating lots of different kinds of foods.
His next surgery is scheduled for May 1st. During this surgery the plastic surgeon will be repairing his cleft palate, the ENT will be putting tubes in, and then an audiologist will be doing an abr. Hopefully the tubes will have a positive effect on the abr results when compared to the last one.
Lastly Tripp now has a favorite tv show, yo gabba gabba, he does not pay attention to the tv at all unless this cartoon is on. He loves the bright colors in the show and all of the singing :)
He is continuing to learn new things despite not feeling well. He is pulling himself up to standing, and starting to cruise around the furniture. He is also eating lots of different kinds of foods.
His next surgery is scheduled for May 1st. During this surgery the plastic surgeon will be repairing his cleft palate, the ENT will be putting tubes in, and then an audiologist will be doing an abr. Hopefully the tubes will have a positive effect on the abr results when compared to the last one.
Lastly Tripp now has a favorite tv show, yo gabba gabba, he does not pay attention to the tv at all unless this cartoon is on. He loves the bright colors in the show and all of the singing :)
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