We went to Boston on Tuesday and arrived at our appt. an hour late due to getting so extremely lost it wasn't even funny! We finally stopped and asked a traffic cop how to get to Mass General. Thank God he was there! :) (We will NEVER go anywhere without a GPS again!) Then we drive forever trying to find the right parking garage and one that the van has clearance for height-wise. Well we finally get inside thinking that we lost our appt., and it was actually set up as a clinic, and you have to wait for the others ahead of you to go, no "real" appt. times, just guidelines to get you there. Well, they were so far behind, that we still had time to get lunch and feed Sammy. So we finally get to see the dr. and it's just the ear,nose and throat dr. We had assumed that the pulm.'s secretary had set up the appt. for the feeding eval, etc. with the ENT dr. We were wrong. So we went through everything with the feeding tube situation with the ENT and he paged the feeding specialist over to the office for us. The ENT told us that he wants us to TOTALLY take Sam off of the Baclofen (not the 1 1/2 ml Brian put him back on) and redo the swallow study with them in about 4 weeks and also have a big pow-wow with the GI and also meet with the head of their ped. neurology dept. that day too. I am very excited to see a "real" neuro with hopefully a bedside manner that actually knows how to talk to people! So we wait now for yet more appt. times from the office....
The good news we got is that the ENT doesn't seem to think that this an emergency surgery we should be rushing to do (the g tube). He said since he has not had anymore pneumonias, and he is ok for the moment, that we could just thicken the liquids and wait to see what the next swallow study says minus the Baclofen. So onward and upward!
Oh yeah, and we had an xray of his sinuses and they don't look too big, we don't need to worry about them. (I was panicking that that's why he was getting so many sinus infections like Luke when he was little.)
So, we also went to visit his new classroom for next year at Stearns. It's a K-1-2 and it looks great..for my out-of-town readers, it's a small school, but has 2 sub. separate classrooms. We brought him with us and he got to meet the teacher and assistant and principal. (All awesome and very down to earth people that will be great for Sam!) I am feeling good about this placement so we have a transition meeting for him next Wed. and then I guess we get him registered. I am nervous about this one boy in the class who will be in 2nd grade in the class next year who is autistic and is VERY hands-on with Sammy. The teacher was trying to tell him to be gentle, but she said he starts to pinch when he gets excited. He was right in Sam's face and was moving Sam's hand around and was touching his head and starting to get a little rough with him. Sammy just looked at him and laughed because he thought the boy was just playing. It will probably take me a bit to get comfortable leaving him in that situation, but I have to trust that the teacher will take care of it. Sammy seemed to love the kids, especially the girls, of course! He will have the same PT next year (yah! He loves Stephanie!) and a great new Speech teacher. A new OT too, we will REALLY miss Jen! :(
So that's the update for now, we have Brian's grandmother's 90th birthday party on Saturday at a local restaurant and of course we'll be doing dinner for my mom on Mother's Day on Sunday. Busy week! :)
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Followers
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! :)
1 comment:
This sounds like they care. The doctor sounds great. So glad that he put this thing in perspective. It makes sense to me. I am happy to hear this.
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