Gracie was also diagnosed with Growth Hormone defincientcy and she started medication last summer. We found a Endorcrinologist closer to home so we were not having to drive to the medical center. Where we live now, the medical center is really far. Since Gracie has so many unknowns, the Endocrin stopped her G.H. treatment but she recently resumed it. However, we stopped it because I want to go holistic with her treatment as well but also because G.H. treatment has a lot of risk- a lot. Gracie has really blossomed at school. This once extremely shy child is that no more. She will actually walk other classmates to the nurse if they need to go and tell the nurse what happened to the child. That is huge for Gracie! She is very confident in many ways but still struggles in certain areas. She loves school but at home she'd rather watch tv than practice writing and especially reading. She really doesn't like to do her site words or reading. She still is more immature than her sibilings and classmates. It's difficult because she is only 5.5 and that puts her the youngest in the class. More on that later. She is very strong willed and we are battling through that. She is very sweet but loves to tattle. She is a very good eater. She shocks us with how much she eats! She is the tallest out of the three and likes to tell the other two so they get mad. We had to tell her she isn't to mention she is the tallest because that causes war between them. Overall she is doing good. If she would try harder in school she'd be doing great but she doesn't so that's that.
Krista
Saturday, January 30, 2016
I'm back and it's 2016!
Oh my it's been a while! We've had a very busy year. The triplets are 5.5 now and are in Kindergarten. They absolutely LOVE school! That's probably and understatement. They really would be happy to go every single day meaning the weekends as well. We decided to put them in different class rooms. It's one of the best decisions we've made. The only challenge has been when they have a class party or field trip. It's hard to be at 3 different events at one time but I've found a way to make it work. Speaking for field trips, the kids went to a farm back in November. The kids' teachers are so amazing. I volunteered to chaperon but they decided not to give me a group of kids so I could bounce around between my 3. I ended up being the homeroom mom for Brody's class because no other parent signed up to volunteer. It's worked out just fine though. Their school is simply amazing. Like cannot believe this is real life amazing. Before school started, we were told that they hired an aid just for Brody and that this person would be with him 24/7 while at school. We were blown away! We never even asked for one! Turns out, his aid has a ton of experience with vision kiddos and let me just say, this woman is AMAZING! His teacher is AMAZING! Madi's teacher is AMAZING! Gracie's teacher is AMAZING! we really couldn't have asked for better. I'll go into some details about each of the kiddos...
Brody- So we started school and had our boxing gloves on because we'd had such horrific experiences in Humble ISD and Conroe ISD. We really just thought it was because we were in public school and I felt like I was going to need to hire a lawyer and make sure there was bail money set aside for a "rainy day' when dealing with their schooling. And then we moved and have found the best gift ever! This school had everything ready for him on day 1. Like I said, they hired an aid just for him! We'd been fighting with the two previous schools with no action so I didn't even mention to this school because I didn't want to be disappointed. His aid is literally by his side all day long. This little boy has made HUGE progress since August. For one, he is finally potty trained during the day! This is HUGE! He started the year literally requiring his aid to put her hand on top of his for him to be able to write (partly because of muscle weakness but also because of his vision). He doesn't require this anymore. For two report grade periods he has a wonderful reading score and it's actually the highest out of him and his sisters! He is incredibly smart and has really shocked and impressed Ricky and I and the school. He eats lunch every single day with his peers without a problem. Last year, Conroe ISD made his sit in a room alone because they said he couldn't focus long enough to eat. That school also was only teaching him and Gracie life skills so really, they can go jump off a bridge! I so badly want to request a meeting with that old school just to show them how smart and great he is doing but I won't because I don't have that kind of time. Anyway, he is on complete grade level work just like his classmates. We are so incredibly proud of him.
Health wise, well.... in October after searching for answers for 5 years, we finally found a wonderful GI doctor to help us with his lack of weight gain. After doing some additional test and trying some more diet things, we decided to put him on a NG tube feed during the night. It was an incredibly hard decision to make. He was admitted into the hospital overnight to make sure he could tolerate the feeds they were giving him. He did gain weight with the tube feeds but it came at a price. The tube in his nose was messing with his sinuses, we were having issues getting feeding supplies from the home health company, and it was just hard on him to have a tube taped to the side of his face 24/7. Last year all three were finally diagnosed with growth hormone deficiency which FINALLY! I'd been telling these doctors for years their lack of growth wasn't just because they were preemie. Last June we started giving all three nightly shots but because Brody wasn't gaining weight and actually lost a lot of weight (he was looking really bad there for a while), we stopped the shots. His body was growing taller because of the shots but it was spending everything doing so and taking away from him being able to get or keep any weight on. Anyway, in December I actually decided to stop all forms of conventional medication! I've done a lot of research and this year I'm committed to doing holistic treatments only. That means he is also off of Focalin that he took daily. We also found out he cannot tolerate gluten or dairy so he is now on a really difficult diet. Taking him off the Focalin was extremely difficult at first. He was out of his mind for a good two weeks and we still have difficult days but before we decided to give up on medication, the Neurologist had to increase his medication and he was on such a high dose to be so young and small and it was not working so really he needed another increase and I just didn't want that for him. Anyway, things are getting a lot better and luckily his teacher is a hand off medication believer and has been very patient while he adjust and his aid is just amazing and has been more stern with him when needed to make sure he stays on track. It's amazing though, when we took him off Focalin his appetite increased almost instantly! He is constantly hungry. So much so I can't feed him enough! Of course this is very difficult now that he can't have any dairy or gluten but he's eating so healthy, fresh fruits and veggies, and protein. The other thing that was super impressive was how much more he talks now and that he has opinions about things whereas before, he would talk but not much. He had an appointment with his Neurologist last week and I told him we took him off medication. I was afraid he was going to be annoyed with me but he actually supported my idea of this experiment and said why not try since he is blowing every one's mind in school. Overall, we are very excited about what the future might hold for him on this new plan of care and we are just so proud of how he is doing.
I'll write a different post for the other kids since this one is so long.
Krista
Brody- So we started school and had our boxing gloves on because we'd had such horrific experiences in Humble ISD and Conroe ISD. We really just thought it was because we were in public school and I felt like I was going to need to hire a lawyer and make sure there was bail money set aside for a "rainy day' when dealing with their schooling. And then we moved and have found the best gift ever! This school had everything ready for him on day 1. Like I said, they hired an aid just for him! We'd been fighting with the two previous schools with no action so I didn't even mention to this school because I didn't want to be disappointed. His aid is literally by his side all day long. This little boy has made HUGE progress since August. For one, he is finally potty trained during the day! This is HUGE! He started the year literally requiring his aid to put her hand on top of his for him to be able to write (partly because of muscle weakness but also because of his vision). He doesn't require this anymore. For two report grade periods he has a wonderful reading score and it's actually the highest out of him and his sisters! He is incredibly smart and has really shocked and impressed Ricky and I and the school. He eats lunch every single day with his peers without a problem. Last year, Conroe ISD made his sit in a room alone because they said he couldn't focus long enough to eat. That school also was only teaching him and Gracie life skills so really, they can go jump off a bridge! I so badly want to request a meeting with that old school just to show them how smart and great he is doing but I won't because I don't have that kind of time. Anyway, he is on complete grade level work just like his classmates. We are so incredibly proud of him.
Health wise, well.... in October after searching for answers for 5 years, we finally found a wonderful GI doctor to help us with his lack of weight gain. After doing some additional test and trying some more diet things, we decided to put him on a NG tube feed during the night. It was an incredibly hard decision to make. He was admitted into the hospital overnight to make sure he could tolerate the feeds they were giving him. He did gain weight with the tube feeds but it came at a price. The tube in his nose was messing with his sinuses, we were having issues getting feeding supplies from the home health company, and it was just hard on him to have a tube taped to the side of his face 24/7. Last year all three were finally diagnosed with growth hormone deficiency which FINALLY! I'd been telling these doctors for years their lack of growth wasn't just because they were preemie. Last June we started giving all three nightly shots but because Brody wasn't gaining weight and actually lost a lot of weight (he was looking really bad there for a while), we stopped the shots. His body was growing taller because of the shots but it was spending everything doing so and taking away from him being able to get or keep any weight on. Anyway, in December I actually decided to stop all forms of conventional medication! I've done a lot of research and this year I'm committed to doing holistic treatments only. That means he is also off of Focalin that he took daily. We also found out he cannot tolerate gluten or dairy so he is now on a really difficult diet. Taking him off the Focalin was extremely difficult at first. He was out of his mind for a good two weeks and we still have difficult days but before we decided to give up on medication, the Neurologist had to increase his medication and he was on such a high dose to be so young and small and it was not working so really he needed another increase and I just didn't want that for him. Anyway, things are getting a lot better and luckily his teacher is a hand off medication believer and has been very patient while he adjust and his aid is just amazing and has been more stern with him when needed to make sure he stays on track. It's amazing though, when we took him off Focalin his appetite increased almost instantly! He is constantly hungry. So much so I can't feed him enough! Of course this is very difficult now that he can't have any dairy or gluten but he's eating so healthy, fresh fruits and veggies, and protein. The other thing that was super impressive was how much more he talks now and that he has opinions about things whereas before, he would talk but not much. He had an appointment with his Neurologist last week and I told him we took him off medication. I was afraid he was going to be annoyed with me but he actually supported my idea of this experiment and said why not try since he is blowing every one's mind in school. Overall, we are very excited about what the future might hold for him on this new plan of care and we are just so proud of how he is doing.
I'll write a different post for the other kids since this one is so long.
Krista
Subscribe to:
Comments (Atom)