The third week is drawing to a close! I cannot believe that Monday marks the first day of week four! This treatment is flying by! (Some days!)
Jack is doing great. Seriously. He's wonderful. We still have meltdowns. We still have tears and fights and all that but food-wise, the kid is on FIRE! He's tried chicken nuggets, pancakes, broccoli, spaghetti, carrots and green beans. They've even got him re-eating apple sauce. He's really gotten the hang of this eating thing!
He's definitely got clear favorites about food. He loves waffles, grilled cheese, peanut butter sandwich, carrots and bananas. He struggles with broccoli but he's never once spit it out and always powers through it.
He's learning how to drink from a cup, something he could never do before because he never had the correct muscle coordination in his face until now. Again. He's a champ.
Because of the work with his Speech Therapist, he happily brushes his teeth twice a day! SAY WHAT?! Before we literally had to pin him down while we brushed them and he cried and gagged. Now? He stands there while I brush and count to 20 per area and claps when we're all done.
Emotionally, he's starting to have a hard time. Up until now, it was new and fun but its clear he wants to go home. We've had to suspend visitors because he doesn't get why they won't take him home. Every visitation was resulting in a 3 hour crying tantrum (and a bloody nose once for me) so we're halting them for a bit. Poor kid. I know he doesn't understand and that's what makes it so hard for me to watch.
I try to focus on the positives of this. So I'm listing my top ten best things about this treatment:
1. Jack and I both have met some incredible people in the last three weeks.
2. His vocabulary has EXPLODED. Seriously. He is constantly talking. Repeating everything. Saying spontaneous sentences. The whole shebang. It's crazy to listen to him. The nurses crack up when he walks up the Nurses' Station to ask for milk and the conversation goes as follows.
Jack: "Milk peas." The nurse says "Ok" and goes and gets it.
Jack: "Tank you, welcome. See you soon."
3. He is learning that he can see me throughout the day and doesn't NEED me to be with him all the time.
4. He is less dependent on TV to help him calm down when he gets upset and needs to "reset" himself.
5. He is sleeping better.
6. He's having less temper tantrums there versus home. Between his speech improving and my parenting improving, we're more in sync with each other and thus can understand each other better.
7. He's becoming more social with other kids.
8. He's learning to trust other adults, not just Mommy and Daddy.
9. I don't have to pay for diapers for him for 8 weeks! (LOL Thanks TriCare!)
10. He's eating! That's the best and biggest reason!
So there you go! This week's update and my 10 ten list. I have a on going copy in my notebook and whenever I'm feeling a pity party coming on, I glance at it. I have a million and one things to be thankful for and it helps to remind me. This may not be the ideal situation but we could have it a lot worse. It's only temporary and it'll be over before we know it!
Until next week!
Saturday, March 31, 2012
Sunday, March 25, 2012
Week Two!
I've been really excited to write this week's update! It's been a really good week for us, with a lot of good news so here it goes!
Jack is doing W.O.N.D.E.R.F.U.L.L.Y. He is beating everyone's expectations. With how severe his separation anxiety was last week and how rough the first few new food meals were, everyone was preparing for the worst.
On Monday they started making him eat the new foods they offered. The first bite of banana at lunch took 8 minutes. At dinner it took 4. At breakfast the next morning it took less than 30 seconds. At lunch he picked it up and ate it all by himself!
Ever since Tuesday, he no longer fights the bite of new food. The way it works is, he gets four foods a meal. He takes 19 bites of those foods, 5 bites, 5 bites, 5 bites and 4 bites. In between his bites he gets praised and gets to watch Octonauts and play with Playdoh. At the end of his normal bites he has to try one new bite to be done. He has no problem with the last bite of food. No fighting, no gagging, no crying. Just chewing and swallowing!
This week in Feeding he's eaten Banana, Waffle, Chocolate Pudding, Apple (which he stopped because he was getting hives after eating them), Grilled Cheese and Peanut Butter Sandwich! In addition, he's tried Pretzels in Speech Therapy to teach him to chew with his back teeth and he's eaten Cheerios and Cheese Puffs to work on texture issues in Occupational Therapy.
This morning at breakfast he's trying steamed Broccoli! Steve's going to call and let me know how it goes! Tomorrow they're starting Spaghetti!
As of right now, his discharge date is set at May 7th. The full 8 weeks but I was talking to his social worker and they're thinking that he *might* be out sometime between April 23rd and April 30th, making it a 6 to 7 week admission!
That's a good update for now! I'll update next week with his new list of foods! Hopefully week three goes as well as week two!
Oh, if anyone is interested, his address at the hospital is
Jack W.
C/O Kennedy Krieger Institute
Room 309
707 North Broadway
Baltimore, MD 21205
Until next week!
Jack is doing W.O.N.D.E.R.F.U.L.L.Y. He is beating everyone's expectations. With how severe his separation anxiety was last week and how rough the first few new food meals were, everyone was preparing for the worst.
On Monday they started making him eat the new foods they offered. The first bite of banana at lunch took 8 minutes. At dinner it took 4. At breakfast the next morning it took less than 30 seconds. At lunch he picked it up and ate it all by himself!
Ever since Tuesday, he no longer fights the bite of new food. The way it works is, he gets four foods a meal. He takes 19 bites of those foods, 5 bites, 5 bites, 5 bites and 4 bites. In between his bites he gets praised and gets to watch Octonauts and play with Playdoh. At the end of his normal bites he has to try one new bite to be done. He has no problem with the last bite of food. No fighting, no gagging, no crying. Just chewing and swallowing!
This week in Feeding he's eaten Banana, Waffle, Chocolate Pudding, Apple (which he stopped because he was getting hives after eating them), Grilled Cheese and Peanut Butter Sandwich! In addition, he's tried Pretzels in Speech Therapy to teach him to chew with his back teeth and he's eaten Cheerios and Cheese Puffs to work on texture issues in Occupational Therapy.
This morning at breakfast he's trying steamed Broccoli! Steve's going to call and let me know how it goes! Tomorrow they're starting Spaghetti!
As of right now, his discharge date is set at May 7th. The full 8 weeks but I was talking to his social worker and they're thinking that he *might* be out sometime between April 23rd and April 30th, making it a 6 to 7 week admission!
That's a good update for now! I'll update next week with his new list of foods! Hopefully week three goes as well as week two!
Oh, if anyone is interested, his address at the hospital is
Jack W.
C/O Kennedy Krieger Institute
Room 309
707 North Broadway
Baltimore, MD 21205
Until next week!
Saturday, March 17, 2012
The First Week
Happy Saint Patrick's Day!
I had every intention of updating this week, however, I was bummed to find out that KKI has blogger blocked :( I was forced to wait until today to write this much awaited (hopefully!) update about our first week at KKI's Feeding Clinic.
The first week was, in a word, intense. Monday was overwhelming to say the least. Getting admitted, meeting most of his team, saying goodbye to Steve and Daphne. Everything was overwhelming. Jack handled it pretty well. There were a few, quite a few meltdowns but luckily, the iPad was the saving grace and by bed time, we were both overtired. Neither of us slept very well, he woke up a lot, I woke up a lot. It was a very long night.
Tuesday was even worse. I think I cried all day long. I missed Daphne more than I ever thought I could. He freaked out at breakfast, even seeing a different type of yogurt, he cried at the sight of the playroom. I felt like all the other parents and playroom staff were judging me and I was terrified that it wasn't going to work. I couldn't leave him anywhere without him screaming Mommy! at the top of his lungs and crying. His main behavioral therapist found me crying in the playroom after his breakfast disaster and told me it was going to be okay. The rest of Tuesday we worked on his intense separation anxiety. He wasn't happy and I felt horrible.
We spent the rest of week building his trust with the staff, working on saying goodbye to Mommy and sometimes Theodore, following rules in the playroom and generally getting used to his schedule there. As of now I can say, some things have been much harder than I ever thought they'd be. I never thought it'd be so hard to walk away from the playroom and listen to him scream for 20 minutes. It sucked. A lot. but some things have been much easier. I have a lot more down time than I thought I would but I'm sure it'll change as his schedule gets busier next week. I was able to shower this week! TWICE! He adjusted much faster than the staff or I could have hoped. Tuesday it was 30 minute meltdowns to the point where they couldn't even do a meal and by Day 5 they started introducing non-preferred foods!
The staff there is amazing. His main feeding therapist H (we aren't allowed to put their full names in blogs), is wonderful. Her assistant Ma is great too. Jack responds wonderfully to both of them. He loves everyone in the playroom too. Our Social Worker Me is amazing, always around to see if she can help out or if I need anything. I haven't had too much to do with his OT or ST aside from brief meetings in the hallways after his sessions. The Feeding Clinic director is also overseeing Jack's case so I've had a meeting or two with him and so far, I have nothing but positive things to say.
The staff on the 3rd floor is the same. Everyone is great. Jack has all the nurses wrapped around his finger and loves to take walks around the floor and flirt with them. They know automatically when we show up at the Nurse's Station that we need a carton of milk and are always impressed and laugh when he says "thank you" and blows them a kiss or fist bumps them.
All in all I'm glad the first week is over. Not just because we're one week closer to be done but because I know we can handle it. We can do this. My son is a rockstar for handling as well as he has. My husband is great for having the house as clean as it was when I got home and my daughter is awesome for handling a Daddy Only household so well.
Now if you'll excuse me, I believe Daphne and I are playing tea!
I had every intention of updating this week, however, I was bummed to find out that KKI has blogger blocked :( I was forced to wait until today to write this much awaited (hopefully!) update about our first week at KKI's Feeding Clinic.
The first week was, in a word, intense. Monday was overwhelming to say the least. Getting admitted, meeting most of his team, saying goodbye to Steve and Daphne. Everything was overwhelming. Jack handled it pretty well. There were a few, quite a few meltdowns but luckily, the iPad was the saving grace and by bed time, we were both overtired. Neither of us slept very well, he woke up a lot, I woke up a lot. It was a very long night.
Tuesday was even worse. I think I cried all day long. I missed Daphne more than I ever thought I could. He freaked out at breakfast, even seeing a different type of yogurt, he cried at the sight of the playroom. I felt like all the other parents and playroom staff were judging me and I was terrified that it wasn't going to work. I couldn't leave him anywhere without him screaming Mommy! at the top of his lungs and crying. His main behavioral therapist found me crying in the playroom after his breakfast disaster and told me it was going to be okay. The rest of Tuesday we worked on his intense separation anxiety. He wasn't happy and I felt horrible.
We spent the rest of week building his trust with the staff, working on saying goodbye to Mommy and sometimes Theodore, following rules in the playroom and generally getting used to his schedule there. As of now I can say, some things have been much harder than I ever thought they'd be. I never thought it'd be so hard to walk away from the playroom and listen to him scream for 20 minutes. It sucked. A lot. but some things have been much easier. I have a lot more down time than I thought I would but I'm sure it'll change as his schedule gets busier next week. I was able to shower this week! TWICE! He adjusted much faster than the staff or I could have hoped. Tuesday it was 30 minute meltdowns to the point where they couldn't even do a meal and by Day 5 they started introducing non-preferred foods!
The staff there is amazing. His main feeding therapist H (we aren't allowed to put their full names in blogs), is wonderful. Her assistant Ma is great too. Jack responds wonderfully to both of them. He loves everyone in the playroom too. Our Social Worker Me is amazing, always around to see if she can help out or if I need anything. I haven't had too much to do with his OT or ST aside from brief meetings in the hallways after his sessions. The Feeding Clinic director is also overseeing Jack's case so I've had a meeting or two with him and so far, I have nothing but positive things to say.
The staff on the 3rd floor is the same. Everyone is great. Jack has all the nurses wrapped around his finger and loves to take walks around the floor and flirt with them. They know automatically when we show up at the Nurse's Station that we need a carton of milk and are always impressed and laugh when he says "thank you" and blows them a kiss or fist bumps them.
All in all I'm glad the first week is over. Not just because we're one week closer to be done but because I know we can handle it. We can do this. My son is a rockstar for handling as well as he has. My husband is great for having the house as clean as it was when I got home and my daughter is awesome for handling a Daddy Only household so well.
Now if you'll excuse me, I believe Daphne and I are playing tea!
Monday, March 12, 2012
And it starts.
Fact: I've started to write this entry about 6 times this weekend and either didn't like it and erased it or got too worked up and walked away or something else happened and it got forgotten about.
Fact: Despite KNOWING that it was happening today, I'm still freaking out.
Fact: I'm going to miss Daphne so much. And I feel awful leaving Steve by himself with a sick little girl. I'm praying that she feels better by tomorrow so she can go back to daycare. She's spending the day with Pa today.
Fact: I've travelled alone with an infant/young toddler before but packing for this seemed like we were packing to never return. There was so much to do.
Fact: I know its going to be hard, I know that a lot of it is going to suck. I'm sure that I'm going to cry at one point or another from either happiness or frustration but I also know that by the end of the everything, the program, the out patient therapy, the home visits, it will all have been worth it.
I do know that there will be WiFi at the hospital so I'll be able to access his blog, although I'm not entirely sure how often during the week I'll be able to update. I might only be able to update on Saturdays when Steve and I switch places. I'll have my cell with me at all times and although I'm not sure I'll be able to answer calls, I should be able to respond to texts.
I just wanted to take a second and say thank you to everyone who reads this and to everyone who has supported us on this long, hard journey. We couldn't have done it alone.
Fact: Despite KNOWING that it was happening today, I'm still freaking out.
Fact: I'm going to miss Daphne so much. And I feel awful leaving Steve by himself with a sick little girl. I'm praying that she feels better by tomorrow so she can go back to daycare. She's spending the day with Pa today.
Fact: I've travelled alone with an infant/young toddler before but packing for this seemed like we were packing to never return. There was so much to do.
Fact: I know its going to be hard, I know that a lot of it is going to suck. I'm sure that I'm going to cry at one point or another from either happiness or frustration but I also know that by the end of the everything, the program, the out patient therapy, the home visits, it will all have been worth it.
I do know that there will be WiFi at the hospital so I'll be able to access his blog, although I'm not entirely sure how often during the week I'll be able to update. I might only be able to update on Saturdays when Steve and I switch places. I'll have my cell with me at all times and although I'm not sure I'll be able to answer calls, I should be able to respond to texts.
I just wanted to take a second and say thank you to everyone who reads this and to everyone who has supported us on this long, hard journey. We couldn't have done it alone.
Monday, March 5, 2012
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