Thursday, January 27, 2005
An update on my update...I was very happy when I checked my Jell-O and it was 'done' so Jack could have it for part of his snack this afternoon. Well, Jack's never had Jell-O before...the look on his face was PRICELESS! He didn't know what in the world I was feeding him...knew it smelled and tasted good when he licked it, but couldn't understand why it was so cold and slippery. He would get the spoonful in his mouth and then dig it out with his fingers...he did this over and over. He likes it but doesn't quite understand it. We'll work on this too. Ha ha!
Hello everyone! I just wanted to give a quick update on Mr. Jack. He's always been my great eater and he continues to amaze me with what he can pack in his tummy in a day. I guess the dietician's advice felt like criticism, because she never mentioned the good things. I know it's her job, but it's hard not to take it personally! I actually called her and asked for clarification on the 40 ounces of fluid Jack needs in a day. My concern was (and is) filling him up on Pediasure and carnation instant breakfast (which are both basically meals in a can) would lessen his appetite. She said we can give him clear liquids as well such as juice and water, and things like Jell-O and ice cream can count towards his total fluids too. So after mixing a huge batch of Jell-O I feel better knowing I don't have to fill him up with all of those heavy liquids. I've been giving him the Duocal with every meal and offering him more to drink throughout the day. I have to write down what he takes in a day to see if we are meeting our goals. So far he's keeping up with his 3 meals and 2 snacks and getting a little more than 20 ounces of fluid in a day...we'll just keep working at increasing that amount! It does sort of feel like our whole day centers around eating, but Jack's happy and that's all that counts! I will keep you all updated. Thanks for thinking of us!
Tuesday, January 25, 2005
We just got back from the feeding team.
First the great points...the OT and SLP were thrilled with Jack's oral motor skills and they were impressed with his straw and cup (assisted) drinking and lip closure. So they only want to see him in the 'full' clinic in three months.
We will see the dietician monthly. The dietician seemed sort of hardened and as though she likes butting heads with moms of these kiddos. For everything I said she had an opposing argument. I felt like 2 lawyers arguing a case. I stayed very nice and very calm and spoke very clinically about the situation. But inside I was screaming -- this is my CHILD we are talking about here!!
She calculated him at 1250 - 1500 cals a day as to what he takes now. She said he isn't getting anywhere near the required amount of liquids...he gets about 20 oz of fluid a day and she would like him to get 40 oz of fluid a day PLUS his 5 regular meals. It's never going to happen. I will try my best but the more you fill a kid (or anyone) up on liquids, the less solids they'll eat.
What she suggests in addition to the high calorie foods is 40 oz of Pediasure, carnation instant breakfast, carnation juice w/ protein, or whole milk. Plus she wants 2 tsp Duocal for each meal 3-5 times a day.
I am hoping this puts the weight on Jack but it feels like I am being set up to fail. I mean realistically I can't see him taking 3 meals, 2 snacks AND 40 oz of liquid. Like I said, I will certainly try and hope for the best.
She said he's technically 'failure to thrive' and if we needed to use the label to get Pediasure or Duocal we will but it's not in the report at this time. I feel so badly because I feel like it's all my fault because I make all of Jack's food, I sit with him for all of his meals I am the one that gives in or gives up when a meal isn't going smoothly. I am the one that researches high cal recipes, shops for the ingredients, prepares the meal to sometimes watch my precious toddler throw it all on the floor for my already FAT dog to eat. Sigh...
I am not going to let myself get discouraged. We are going to try this 'plan' for a month and see what happens. Thanks for listening!
First the great points...the OT and SLP were thrilled with Jack's oral motor skills and they were impressed with his straw and cup (assisted) drinking and lip closure. So they only want to see him in the 'full' clinic in three months.
We will see the dietician monthly. The dietician seemed sort of hardened and as though she likes butting heads with moms of these kiddos. For everything I said she had an opposing argument. I felt like 2 lawyers arguing a case. I stayed very nice and very calm and spoke very clinically about the situation. But inside I was screaming -- this is my CHILD we are talking about here!!
She calculated him at 1250 - 1500 cals a day as to what he takes now. She said he isn't getting anywhere near the required amount of liquids...he gets about 20 oz of fluid a day and she would like him to get 40 oz of fluid a day PLUS his 5 regular meals. It's never going to happen. I will try my best but the more you fill a kid (or anyone) up on liquids, the less solids they'll eat.
What she suggests in addition to the high calorie foods is 40 oz of Pediasure, carnation instant breakfast, carnation juice w/ protein, or whole milk. Plus she wants 2 tsp Duocal for each meal 3-5 times a day.
I am hoping this puts the weight on Jack but it feels like I am being set up to fail. I mean realistically I can't see him taking 3 meals, 2 snacks AND 40 oz of liquid. Like I said, I will certainly try and hope for the best.
She said he's technically 'failure to thrive' and if we needed to use the label to get Pediasure or Duocal we will but it's not in the report at this time. I feel so badly because I feel like it's all my fault because I make all of Jack's food, I sit with him for all of his meals I am the one that gives in or gives up when a meal isn't going smoothly. I am the one that researches high cal recipes, shops for the ingredients, prepares the meal to sometimes watch my precious toddler throw it all on the floor for my already FAT dog to eat. Sigh...
I am not going to let myself get discouraged. We are going to try this 'plan' for a month and see what happens. Thanks for listening!
Thursday, January 20, 2005
Jack is doing well! We've had a busy few weeks with appointments and it's been so COLD I hate to leave the house. Jack is now crawling faster and faster as well as trying his hardest to pull to stand. He tries to use his upper body without bringing his legs along...we have to remind him that his legs are there to help him! After a few tries (and me supporting him under his butt) it clicks and he finally gets up! He looks so proud when he does it. He can take steps with two hands held and needs less support as the weeks go on. Jack was fitted for DAFOs (dynamic ankle foot orthotics) this morning. They are plastic braces that go right below his knee. Jack wasn’t sure what to make of the casting. They sat him on a table with me sitting next to him and put both legs in plaster casts to create a mold. They cut them off and are sending them away to get his DAFOs made. I am looking forward to getting them because I believe it will make all the difference in his standing, cruising and eventually walking!
Jack has remained seizure free since being put on Tegretol late this summer. He adjusted well to his meds and now knows the drill each morning and evening! We had a check up with his neurosurgeon in December and he only wants to see him back in 9 months time instead of our usual 6 months.
Jack doesn't have any words yet except mama, dada, and baba (for bottle) he has a few signs but isn't consistent with them although just yesterday he constantly made the sign for ‘more’ when he wanted more Goldfish crackers. He understands very much of what we say and I am waiting for what goes in to finally come out! He can follow simple requests like brush hair, pet puppy, where's daddy?, get your sock, etc. One really exciting accomplishment is doing pattycake upon request (WITH BOTH HANDS!!!) For the longest time Jack would completely ignore his right hand but as the weeks go by he uses it more and more. Over Christmas we learned that he can rip paper with two hands. It's so great to see him using both hands together!
He's eating all kinds of table foods -- basically everything we eat. I am so proud of his progress in this area. Even though he eats well and eats high calorie foods he is not growing as well as his pediatrician would like. We went to his ped for a weight and growth check and he weighed in at 20 lbs, 12 oz and 33 inches tall. He is declining slightly on his own growth curve so the ped referred us to the feeding clinic. Our appointment is this coming Tuesday. Please send all the positive thoughts you can for that appointment!
Jack has remained seizure free since being put on Tegretol late this summer. He adjusted well to his meds and now knows the drill each morning and evening! We had a check up with his neurosurgeon in December and he only wants to see him back in 9 months time instead of our usual 6 months.
Jack doesn't have any words yet except mama, dada, and baba (for bottle) he has a few signs but isn't consistent with them although just yesterday he constantly made the sign for ‘more’ when he wanted more Goldfish crackers. He understands very much of what we say and I am waiting for what goes in to finally come out! He can follow simple requests like brush hair, pet puppy, where's daddy?, get your sock, etc. One really exciting accomplishment is doing pattycake upon request (WITH BOTH HANDS!!!) For the longest time Jack would completely ignore his right hand but as the weeks go by he uses it more and more. Over Christmas we learned that he can rip paper with two hands. It's so great to see him using both hands together!
He's eating all kinds of table foods -- basically everything we eat. I am so proud of his progress in this area. Even though he eats well and eats high calorie foods he is not growing as well as his pediatrician would like. We went to his ped for a weight and growth check and he weighed in at 20 lbs, 12 oz and 33 inches tall. He is declining slightly on his own growth curve so the ped referred us to the feeding clinic. Our appointment is this coming Tuesday. Please send all the positive thoughts you can for that appointment!
Subscribe to:
Posts (Atom)
