Tomorrow we head to KC for the feeding clinic evaluation. I am pretty nervous about what to expect and what the outcome will be. What if they accept us but McKenna doesn't do well with the treatment and we fail so are stuck on the feeding tube forever? If McKenna doesn't get accepted where do we go from here? How soon after evaluation will we know if this is an option for us? How long will she be on the experimental drugs...yes a ton of questions!
SO, to help us keep our mind off things while daddy is at urgent care with sick little Keaton mommy painted McKenna's fingernails purple. She looks so cute and was such a big girl sitting while I painted. Didn't fuss or yank her hand away. She wanted her toes done too but we ran out of time.
I have two outfits picked out for tomorrow - both brand new. One is green and white and pink, other is orangish pink and brown. And we have her glitter pink shoes set out too. So a new outfit, painted fingers and pigtails...if thatttt doesn't get her into the feeding study I don't know what will.
I just keep thinking tomorrow could be the day that changes our future. Maybe tomorrow they will have answers and options for us. Of course this is how I felt pre-wean and how I felt pre Chicago trip. One day at a time. Today she is still on a feeding tube and as I type this she is hooked up to a machine, laying in her crib in mommy's room and talking to herself. I love her so much and just want her to have the world. Is that asking too much?
Tuesday, June 28, 2011
Keaton's Fever
Poor Keaton, woke up with a small fever. Didn't take his temp because within 10 or 15 minutes seemed to go away. We went to a friend's house because mommy thought Keaton probably didn't realllllly have a fever earlier, was just from sleeping with blankets.
When he woke from his 30 minute nap, yes that was a SHORT nap today, he had fever of 101.5. He felt so hot, was a tiny fussy but didn't seem to be sick. It's 8 pm and Keaton now has a fever of 103.6...the highest temp he has ever had.
Mommy has always been told don't call until 103, don't take in until 105. SO our urgent care closes at 8, so daddy rushed him there, got him in 5 minutes before they close and now we are just waiting to see what is wrong. I am guessing ear ache, we will see. My poor baby boy is so sick he didn't even cry or fuss when daddy turned off "Blues Clues" - his favorite show.
When he woke from his 30 minute nap, yes that was a SHORT nap today, he had fever of 101.5. He felt so hot, was a tiny fussy but didn't seem to be sick. It's 8 pm and Keaton now has a fever of 103.6...the highest temp he has ever had.
Mommy has always been told don't call until 103, don't take in until 105. SO our urgent care closes at 8, so daddy rushed him there, got him in 5 minutes before they close and now we are just waiting to see what is wrong. I am guessing ear ache, we will see. My poor baby boy is so sick he didn't even cry or fuss when daddy turned off "Blues Clues" - his favorite show.
Thursday, June 23, 2011
First Baths
Well after over 26 months daddy finally gave the babies a bath. Mommy pulled her back out a couple days ago when picking a piece of paper up from the ground and wham that's all it took. Finally able to walk today, but still too painful to bend over, so daddy had to step in and wash the kids. He was so stressed out about it - pretty funny to watch. Mommy was able to get on ground and wash McKenna so daddy could see how to do it, but couldn't get Keaton to come to my side of the bath. The question is now that daddy knows how to wash his kids, will he ever do it again?
Wednesday, June 22, 2011
So Cute
I can't help but wonder if other parents think their kids are as cute as I think mine are. I truly find myself laughing all day long, of course along with yelling and disciplining, but still...
This week Keaton woke up and was looking out the window and announced there weren't any dinosaurs outside. He seemed so surprised that he wasn't seeing any. And then when we were in the kitchen watching McKenna being tube fed he laid on the floor and saw a spot of water and started saying, "I see a snail." It's amazing to me his imagination. It's so fun to watch it take place. And then again tonight while looking out the window he told daddy that he saw a Brontosaurus. Spelling on that dinosaur I have no idea!
McKenna has really started saying "I love you," But it comes out "I wuv ewe". This week she learned to yell it REALLY loud and add mommy at the end. So she walks around saying "I wuv ewe mommy." The first part yelled, and mommy is spoken softly. Too cute.
Both kids are sick right now. They have runny noses and congestion which makes them nasal sounding when talking which just adds to the cuteness. Of course the whining and fussing that goes with the colds...that part I would love to trade in.
This week Keaton woke up and was looking out the window and announced there weren't any dinosaurs outside. He seemed so surprised that he wasn't seeing any. And then when we were in the kitchen watching McKenna being tube fed he laid on the floor and saw a spot of water and started saying, "I see a snail." It's amazing to me his imagination. It's so fun to watch it take place. And then again tonight while looking out the window he told daddy that he saw a Brontosaurus. Spelling on that dinosaur I have no idea!
McKenna has really started saying "I love you," But it comes out "I wuv ewe". This week she learned to yell it REALLY loud and add mommy at the end. So she walks around saying "I wuv ewe mommy." The first part yelled, and mommy is spoken softly. Too cute.
Both kids are sick right now. They have runny noses and congestion which makes them nasal sounding when talking which just adds to the cuteness. Of course the whining and fussing that goes with the colds...that part I would love to trade in.
Saturday, June 18, 2011
Special Moms
Today I sat in a room full of moms with children that have special needs. Children with hearing or sight impairment, physical disabilities, cognitive delays, speech and feeding issues. I looked at each of the women and studied their faces that had smiles stretched ear to ear and watched as they laughed and talked with one another. They all seemed happy and hopeful. I kept thinking of the hours upon hours that they have invested in their children in hopes of seeing their child reach milestones or make improvement and literally caught myself on numerous occasions fighting the tears. They all seemed so strong and their burdens seemed so much greater than mine, and yet they were still pressing on and sharing with one another ideas and possibilities.
A feeding/speech therapist was there that I have heard wonders of from a friend and we were able to ask questions and the entire time I was on the edge of my seating praying and begging God to have this man share SOMETHING that would give me direction on how to help little Mickey eat. But time ran out, I had to get home to hook McKenna up to the tube and I came home without answers. The one positive, in addition to meeting amazing and strong women, is that the therapist told me to call next week and ask all my questions and he won't charge me for the call.
So next week I will call him and ask my million questions and see if he thinks there is something he can do to help McKenna before we financially invest in yet another therapist or doctor that claims he can help until he meets her and sees how complex her situation is and passes her to another person.
I am feeling very down tonight and helpless. Our pediatrician isn't on our side, our GI just wants to keep giving McKenna more and more meds, our therapists don't know what to do so they just hang out and talk or read her books and God, the one true Healer is apparently saying it's not her time to be healed yet.
So tomorrow we will be woken by retching most likely, and we will tube feed McKenna every three hours, and we will offer her food that she will ignore and refuse to eat or taste and we will hold the rag while she retches and pukes and we will play with her hair or rub her back to try to calm her, and we will debate what the next step is...we really just don't know where else to go from here. And yes...tonight I am having a pitty party.
A feeding/speech therapist was there that I have heard wonders of from a friend and we were able to ask questions and the entire time I was on the edge of my seating praying and begging God to have this man share SOMETHING that would give me direction on how to help little Mickey eat. But time ran out, I had to get home to hook McKenna up to the tube and I came home without answers. The one positive, in addition to meeting amazing and strong women, is that the therapist told me to call next week and ask all my questions and he won't charge me for the call.
So next week I will call him and ask my million questions and see if he thinks there is something he can do to help McKenna before we financially invest in yet another therapist or doctor that claims he can help until he meets her and sees how complex her situation is and passes her to another person.
I am feeling very down tonight and helpless. Our pediatrician isn't on our side, our GI just wants to keep giving McKenna more and more meds, our therapists don't know what to do so they just hang out and talk or read her books and God, the one true Healer is apparently saying it's not her time to be healed yet.
So tomorrow we will be woken by retching most likely, and we will tube feed McKenna every three hours, and we will offer her food that she will ignore and refuse to eat or taste and we will hold the rag while she retches and pukes and we will play with her hair or rub her back to try to calm her, and we will debate what the next step is...we really just don't know where else to go from here. And yes...tonight I am having a pitty party.
Sunday, June 12, 2011
The Gift of Speech
McKenna's vocabulary has doubled in the past month. Beginning of May she was saying a few over 50 words. Today she is saying over 110 words and even putting two or three words together. She is very big on asking, "What's that?" or "Where daddy go?" While she probably understands most of what she is saying, sometimes I think she just repeats what she hears Keaton say and then she receives so much praise for talking she repeats over and over.
I love to hear McKenna say, "Sawee" for sorry, "tank ewe" for thank you, "peas" for please" "teeton" for Keaton, "damn awe" for grandma. She has a super cute little voice and she is so proud of herself when she talks. The difficult part is that sometimes talking causes her to retch. Not sure if it tickles her throat the wrong way or what, but it's so sad.
McKenna is starting to get more into books and today started trying to say a few of the words she had just heard read. We have been working a little with flashcards, and also trying to identify more stuff when we are being quiet and encouraging McKenna to repeat. She has to be in the right mood to agree to repeat.
Everyone says girls talk your ears off, so I am not in a rush to get her to talk, just want her to be able to communicate when she needs to. smiles.
I love to hear McKenna say, "Sawee" for sorry, "tank ewe" for thank you, "peas" for please" "teeton" for Keaton, "damn awe" for grandma. She has a super cute little voice and she is so proud of herself when she talks. The difficult part is that sometimes talking causes her to retch. Not sure if it tickles her throat the wrong way or what, but it's so sad.
McKenna is starting to get more into books and today started trying to say a few of the words she had just heard read. We have been working a little with flashcards, and also trying to identify more stuff when we are being quiet and encouraging McKenna to repeat. She has to be in the right mood to agree to repeat.
Everyone says girls talk your ears off, so I am not in a rush to get her to talk, just want her to be able to communicate when she needs to. smiles.
The Cutest Sayings
I don't want to forget the things that Keaton says. They are so cute and half of it is his delivery. He has the sweetest little voice and the way he raises and lowers his tones is so cute. So here are a few of the wonderful things he has said, though they aren't nearly as cute as when he actually does say them...
We were all in the car and out of nowhere Keaton said, "The car tooted."
Sitting in livingroom and Keaton was bored so he walked to mommy and said, "How about we go on a drive?" Yes, he said all those words at only 26 months old. Too funny.
On way home from church, mommy "Keaton, how much fun did you have? Did you have this much" (said in a tiny low voice and showing with fingers a small amount of fun. Keaton - "Yes, this much fun." Mommy - "Or did you have THIS much?" (voice loud and arms stretched). Keaton, "Yes, this much fun." Mommy - "Really? THISSSS MUCH?" Keaton, "well, no not THAT much."
Mommy, "Keaton, what do you want to eat? Chili, pasta, sandwiches..." Keaton, "I have an idea. How about cupcakes?"
When we go to Grandma Susie's house Keaton literally squeals out loud and starts to hyperventilate. He gets that excited. And every house we drive by or walk by, regardless if we are going there, he says "That's not Grandma's house, that's not grandma's, that ones not...how about we go to Grandma's? that's not grandmas....
Keaton threatens McKenna quite often that he will spank her bottom if she doesn't do what he wants. He is great at sharing until recently when he has learned the power of ownership. Every toy he sees he wants.
Keaton loves to hear books over and over and will recite them to you...he can learn most of a book after just a few times hearing it. If we go get in the car he asks to go to grandma's house or Andy's (frozen custard). If we go to Target he requests an Icee. He lvoes to walk around and tells McKenna to hold his hand. He is the sweetest most loving little boy. So blessed am I!
We were all in the car and out of nowhere Keaton said, "The car tooted."
Sitting in livingroom and Keaton was bored so he walked to mommy and said, "How about we go on a drive?" Yes, he said all those words at only 26 months old. Too funny.
On way home from church, mommy "Keaton, how much fun did you have? Did you have this much" (said in a tiny low voice and showing with fingers a small amount of fun. Keaton - "Yes, this much fun." Mommy - "Or did you have THIS much?" (voice loud and arms stretched). Keaton, "Yes, this much fun." Mommy - "Really? THISSSS MUCH?" Keaton, "well, no not THAT much."
Mommy, "Keaton, what do you want to eat? Chili, pasta, sandwiches..." Keaton, "I have an idea. How about cupcakes?"
When we go to Grandma Susie's house Keaton literally squeals out loud and starts to hyperventilate. He gets that excited. And every house we drive by or walk by, regardless if we are going there, he says "That's not Grandma's house, that's not grandma's, that ones not...how about we go to Grandma's? that's not grandmas....
Keaton threatens McKenna quite often that he will spank her bottom if she doesn't do what he wants. He is great at sharing until recently when he has learned the power of ownership. Every toy he sees he wants.
Keaton loves to hear books over and over and will recite them to you...he can learn most of a book after just a few times hearing it. If we go get in the car he asks to go to grandma's house or Andy's (frozen custard). If we go to Target he requests an Icee. He lvoes to walk around and tells McKenna to hold his hand. He is the sweetest most loving little boy. So blessed am I!
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