ok, so we went to the sleep study last week and that went ok..we won't get the results for a week or so...
We went to his swallow study this morning and he aspirated everything they gave him. So the GI we saw in the afternoon told us that we are looking at a g-tube. His ped. pulmonolgist also called our ped. this afternoon and told him that Sam would definitely have to get a g-tube. We are holding off on any major decisions until we wean him off of the Baclofen on the chance that that is what is causing his aspirating, from the weak swallowing muscles. We will re-do the swallow study in about 3 weeks and see what it says... can't hurt to see...
We feel like Sam eating food by mouth was the one blessing we had , that we had somehow luckily dodged the g-tube bullet...so much for that..we also have an endoscopy and ph probe test scheduled for the last week in Feb. to see if he needs surgery for reflux as well.
The good news is that the rep came form the comm. device place today and was literally blown away at how great Sam did with the device in terms of being able to navigate it and follow directions we gave him. He even recognized some numbers on dice! I was blown away at that! I knew he was smart, but wow! I didn't realize he knew those numbers by sight! My big guy! We put the order in and will be getting the actual device in 4-8 weeks. We had to have SOMETHING positive from our day!
Please say prayers for my little man...he needs all that he can get..he has been through so much lately and has so much more to go through yet...
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God Chooses A Mom for A Disabled Childby Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles. "A mirror will suffice."
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles. "A mirror will suffice."
About Me
- ellen :)
- MA
- I'm a wife of 8 years, a mom of 2 gorgeous boys, one who has CP, and a lover of turtles! :)
8 comments:
I will be praying for Sammy for sure. I know that it must be frustrating to think about a g-tube. Even in the worse case scenario that he would have to get one, maybe he still would be able to eat some by mouth too. I pray that it is just the baclofen causeing the problem. I pray that it all work out well. Lots of kids of g-tubes these days, both the physically able and CP. So many kids have trouble with all that oral motor stuff. I wonder if this is just a new phenomenon? I know several kids, who walk and run, and they have g-tubes to help supplement and supply food. You would never know it by looking at them. I wonder what kids did in the old days before all the tests?
I am very excited to hear that he did so well with the communication device. That will be great fun. It is so obvious that he is bright. You can just tell it in his eyes. That is a real blessing. Being able to communicate freely and show his smarts will really open up so many things for your litte sweetie. Plus, I think it will totally change how people around him perceive him for the better. I can't wait to hear more about it. Emma tried the My Tobii recently. She did pretty well with it. But she was tired and sick with that chest cold, medicated to the gills, and she couldn't handle more than 4 icons on the screen at one time. Her vision is an issue. With the cost, it is hard to tell if she could maximize the use of the device to its full capacity right now. I would like for her to be able to use more of the screen too. I can't wait to watch Sammy's progress with his new device. I think we are going to try it again since Emma is feeling better. The rep says she will let us know when she will be in our area again. I am nervous about it because we will have to eat the cost, and it is A LOT. I have to make absolutely sure Emma can really use it fully with her vision before I can justify the cost.
Thanks for the prayers, Amy! They did tell us that he would be able to supplement by mouth so he gets the pleasure of eating..I am just trying to avoid him losing his new found coordination skill with actually eating real solid toddler meals..I guess that's my biggest worry...thank you for the reassurance...I think I was in a worse space with this last night..it was just so surreal..we have been fine for so long and now so much..ugh..
I am really excited about this new computer! He loves it and can show his funny sense of humor with it...:)
I will be keeping your family in my prayers. Let us know when he gets the gtube if he ends up needing it. we werent thrilled about audrianna getting it either but on a positive side she hasnt been sick as much as she was before she got the gtube. It was so nice running into sammy, you and Brian the other day and of course i blogged about it. Thats kool about the communication device and how smart sammy is. maybe someday audrianna will finally get her communication device
Ugh, Ellen! I'm so sorry you're dealing with so much all of a sudden! I hope it's just the baclofen and he won't need the g-tube. How was the sleep study? Did they hook him up to a million wires? Was he able to sleep and could you stay with him? I've often thought about getting one for Malayna to figure out why she doesn't sleep but I figure if she doesn't sleep here, she'd never sleep there!
I think the fact that Sammy is able to show you just how smart he is with the comm device is a real blessing! Cognitive ability is the one area that I really worry about Malayna still. She doesn't seem to know letters, numbers or colors yet but I'm not giving up hope yet. I can't wait to see how much Sammy has to "say" when he gets his own device. I'll just bet he's gonna be a real funny guy!
Hang in there! Big hugs to you and Sammy!!
It was great seeing you guys, too, jenny!
Thank you for the prayers!
Sheila,
The sleep study went ok...they were drilling on the other side of our wall while he was trying to sleep! They hooked him up with probes everywhere! Thankfully, Sammy didn't care because he's had a few EEG's and it was the same deal...he went to sleep with his bottle like he normally does and then I put him down and they woke him back up with finishing placing the last probes and the nasal canulla. Then he went back to sleep and was only up about twice, and it wasn't really waking up like he normally does, so I don't think they will find out what's waking him up.
We had our own room and we were able to sleep their with him. He had the hospital bed and Brian had a vinyl pull down bed like in the maternity wards for the dads and I had a pull-out chair which sounded like a donkey when you rolled over on it! The tech kept waking me up all night coming in the room, so I got ZERO sleep, but Sammy and Brian slept pretty well. :) We have to do another overnight with the ph probe which is NOT fun at all..we did it when he was 2 months old and ended up leaving in the afternoon because he was crying and miserable the whole time. Not fun having a tube down your nose and throat all day! We also were sharing a room with another little girl whose parents were white trash and just made a rucous the whole time we were there and upset Sam.
I will keep everybody updated on the device when we finally get it..the waiting will be the worst!
I can't believe they were drilling next to a sleep study room! How ridiculous! Glad it went fairly well though. I couldn't help but chuckle at the donkey chair comment! Good luck with the PH probe, that one sounds like no fun!
thanks, Sheila! Not looking forward to it!
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