I just got done putting Lauren to bed and so far so good. She has definitely had some trouble sleeping the last two weeks. She was calling out to me the other night around 1:30am, desperate with the "mommy, mommy, MOMMY!" When I dragged myself out of bed to check on her, she animatedly said "Look!" and pointed at Hop-hop, who was tragically stuffed between her mattress and the side of her crib. After this urgent situation was corrected, I covered her up again, tucked her in, and she happily went back to bed. At 3am, I got the "mommy, mommy, MOMMY!" call again. I returned to her bedroom right away for her to sweetly request, "Mommy, put me to bed again." Not exactly what I want to hear when woken up at 3am. So she has been waking up a lot but not once has it been "mommy, this cast is bothering me" so that's good.
Lauren's 3 hrs per day of therapy is continuing, and I've still seen some continued improvement in the strength of her right hand. She's able to hold a fork or spoon long enough to get it to her mouth, and she was eating M&M's today with only a little assistance twisting her hand to face her mouth. She had homework over the weekend of picking up Play-doh balls, which got thrown gleefully. She also had the task of opening and closing cabinets and drawers, which grandma helped her with.
I've already seen more improvement in the strength and coordination than I had hoped for, but now I'm wondering how much of it she'll keep after she regains the use of her left arm (it's usually John's job to be the pessimist, except in medicine). It seems like she'll do what's easiest for her, which would mean using her left hand. Even with the cast on, she frequently has been using the left arm to carry around dolls or bang on buttons. Sometimes she'd rather eat by sticking her face onto the plate rather than picking things up with her right hand.
Last week, Lauren worried me when she said "I can't use this arm" while I was changing her big girl Pull-Up. I thought that she was referring to the cast again but then I saw that she was pointing at her right arm with the casted left arm while saying "I can't use this arm". It's the first time I've heard her acknowledge any trouble with her right arm at all. I was taken by surprise because I really didn't think she was aware of any problem since it's been there all her life. I'm still not sure if I interpreted her right. I kind of smoothed over the question saying, "Sure you can. That's what we've been working on. You're practicing using that arm so that it will get stronger." I've talked to her about practicing using her arm and getting stronger so much that now she tells other people that's what she's doing when they ask about her cast.
On a lighter note, I had the best parenting night in a long time the other night. I came home from work Monday exhausted and was immediately put to bed next to John on the floor of Lauren's room. They were all playing the "Night-night" game (my favorite!) and I got to play. Lauren took Hop-hop from John and gave it to me, then sang me a lovely song that went something like:
"Twinkle, tinkle little star,
like a diamond in the sky,
like a diamond in the sky,
like a diamond in the sky,
like a diamond in the sky
(Refrain) Twinkle, tinkle little star,
like a diamond in the sky,
like a diamond in the sky,
(John and I start laughing, then rolling around laughing)
like a diamond in the sky,
Twinkle tinkle little star,
like a diamond in the sky . . 'top laughing "
Delanie brought us a continual stream of new babies that "just came out of my belly", named Annabel, Annabel 2, etc. John is grossed out by babies coming out of Delanie's belly, but even more so when they need to breast feed. We played the game for about an hour, then actually went to sleep. Now that's a great night! Boy, am I old.
I think Delanie aged by about 25 years at Grandma and Grandpa-pa's house for the week earlier this month. She keeps talking about the Nor'easter they had there. For example, "The rain here is just like a Nor'easter, only it's not as windy. When we had the Nor'easter at Grandma's house, it was raining, . . . and it was wind-ing (with elaborate hand gestures). There were houses under water (elaboration?) and the boardwalk was under water, but grandma's house was not under water. Do you know why? It's on high ground. That's why." Then she goes on to talk about the bulkheads, and the number of inches of rain they got (11). We'll have to keep sending her there if there's any chance of her going straight to first grade next year.
Looking forward to Thanksgiving tomorrow! Looking forward to Lauren getting her cast off next week too!
Wednesday, November 25, 2009
Thursday, November 19, 2009
Week 2 Kennedy Krieger - Nov 19th
Lauren's been wearing her cast for about a week and a half now and she's doing much better than I would if our roles were reversed. She has a friend at therapy named Isaiah who is 19 months old. He also has his left arm casted so I think that normalizes the treatment for her. For Lauren's whole first week, Isaiah called her "the baby". I'd see him pushing the mini-shopping cart up the hall and telling his therapist "let's go see the baby". Pretty ironic since Lauren is bigger than him and throws far fewer tantrums.
So far, I've noticed that her right hand is not as tight and fisted all day. It's very loose and flexible and she's able to open and close it relatively well, but can't open to full extension. She was coloring this morning in the therapy waiting room (with help) and her fist strength is improved from last week even. The choice of coloring book is interesting, though. The only coloring book in the pathetic waiting room here at Kennedy Krieger is about the history of America. Lauren started by coloring a bank robbery in Dodge City, KS, then moved on to coloring a sketch of the Boston Tea Party, and finished her trio of coloring American history with a picture of the Redcoats and Militia Men.
I've noticed the staff at Kennedy Krieger in general really have their acts together. Lauren's schedule in therapy is very organized and the therapists are always very prompt and upbeat, yet firm with Lauren's therapy. Everyone who passes by greets me, including the handymen and painters. I don't know how they get that kind of atmosphere here, but I'd like to find out. One thing I've learned being in the waiting room for 3 hours at a time is that Lauren and our family have it easy compared to some other families coping with special needs kids. In the waiting room, I made sure to show Lauren the framed articles with pictures of other kids with casts on playing putt-putt and doing classwork. Sure, everyone wears casts sometimes, right?
Delanie's back home since Sunday, and she had a rough time in school on Tuesday. It was her first day back after a week at grandma's house and according to her teacher, she was really misbehaved. Ms. Belinda had to pull grandma aside when she picked up Delanie to ask her what was going on at home. Grandma told Ms. Belinda nothing much was new, except Delanie was out of town for a week getting two-on-one attention from the grandparents, her sister is now wearing a cast for a month, and the whole family is moving in two months. No big upheavals there from a four year old perspective, heh?
Delanie and I had a talk and she was very good Wednesday at school except "one minor problem involving physical aggression" according to Ms. Belinda. I love how Ms. Belinda always gives the vague story and says something like "but we're working on that, right Delanie?" in a cheery voice. Delanie will then climb in the car and tell me all the details. "Cassidy butt in line in front of me to wash our hands after we came in from outside, so I pushed her". We have the obligatory "What should you do next time instead" talk and fingers crossed, she'll have no problems today. After all, movie night is on the line.
Delanie, Lauren, and I always have interesting conversations in the car on the way home from school. Usually they involve an exchange such as:
Delanie: "Don't look at me!"
Lauren: "Don't talk to me."
Delanie: "I told you not to look at me"
Lauren: "Don't talk!"
(Both break down crying)
Last night, as we're driving over an overpass, Lauren announced "I want to go in a building." Hmm, pretty vague. "What kind of building, Lauren?" "WaWa," she replied. Then Delanie jumped in, "I want to go in to 7-11! We never go in the 7-11." "No, Wawa!" "Ok, we'll go in the Wawa tomorrow morning for coffee." To which Delanie argued, "but I want to go in the 7-11. It's so BIG in there. Lauren, I bet we'd lose you in there it's so big in there." "NO!!!" Lauren shouts in terror. (Both break down crying)
Only kidding, they didn't reach the crying stage last night. I thought Lauren would break down this morning on the way to Kennedy Krieger when we were having our typical in the car conversation. She told me a cheerfully, "I can't use this arm," while holding up her casted arm. I told her that she was going to practice using the other arm for a while, and then we'd use the left one again later. She replied, "nooo" in a sad voice and moaned like she was about to cry. "Look!! Lauren, outside the window, it's a BUS STATION! and a MAILBOX!" Lauren: "A MAILBOX?!?" She was immediately highly entertained by a mailbox. Have to love a two year old psyche.
Lauren really has continued to have an awfully big growth in speech with her constraint therapy, despite Delanie returning home. She informed me when she woke up that she is a big girl now and no longer likes her crib. When we stopped at the Wawa this morning, she said "Look at all these people getting out of their cars." (FYI: Delanie and I went to the 7-11 last night too because we never go there. I am a pushover.) In the car today, Lauren sang me such classics as "It's raining, It's pouring . . " and "Twinkle tinkle, go away, come again another day". Looking forward to hearing what else she has to tell us . . .
So far, I've noticed that her right hand is not as tight and fisted all day. It's very loose and flexible and she's able to open and close it relatively well, but can't open to full extension. She was coloring this morning in the therapy waiting room (with help) and her fist strength is improved from last week even. The choice of coloring book is interesting, though. The only coloring book in the pathetic waiting room here at Kennedy Krieger is about the history of America. Lauren started by coloring a bank robbery in Dodge City, KS, then moved on to coloring a sketch of the Boston Tea Party, and finished her trio of coloring American history with a picture of the Redcoats and Militia Men.
I've noticed the staff at Kennedy Krieger in general really have their acts together. Lauren's schedule in therapy is very organized and the therapists are always very prompt and upbeat, yet firm with Lauren's therapy. Everyone who passes by greets me, including the handymen and painters. I don't know how they get that kind of atmosphere here, but I'd like to find out. One thing I've learned being in the waiting room for 3 hours at a time is that Lauren and our family have it easy compared to some other families coping with special needs kids. In the waiting room, I made sure to show Lauren the framed articles with pictures of other kids with casts on playing putt-putt and doing classwork. Sure, everyone wears casts sometimes, right?
Delanie's back home since Sunday, and she had a rough time in school on Tuesday. It was her first day back after a week at grandma's house and according to her teacher, she was really misbehaved. Ms. Belinda had to pull grandma aside when she picked up Delanie to ask her what was going on at home. Grandma told Ms. Belinda nothing much was new, except Delanie was out of town for a week getting two-on-one attention from the grandparents, her sister is now wearing a cast for a month, and the whole family is moving in two months. No big upheavals there from a four year old perspective, heh?
Delanie and I had a talk and she was very good Wednesday at school except "one minor problem involving physical aggression" according to Ms. Belinda. I love how Ms. Belinda always gives the vague story and says something like "but we're working on that, right Delanie?" in a cheery voice. Delanie will then climb in the car and tell me all the details. "Cassidy butt in line in front of me to wash our hands after we came in from outside, so I pushed her". We have the obligatory "What should you do next time instead" talk and fingers crossed, she'll have no problems today. After all, movie night is on the line.
Delanie, Lauren, and I always have interesting conversations in the car on the way home from school. Usually they involve an exchange such as:
Delanie: "Don't look at me!"
Lauren: "Don't talk to me."
Delanie: "I told you not to look at me"
Lauren: "Don't talk!"
(Both break down crying)
Last night, as we're driving over an overpass, Lauren announced "I want to go in a building." Hmm, pretty vague. "What kind of building, Lauren?" "WaWa," she replied. Then Delanie jumped in, "I want to go in to 7-11! We never go in the 7-11." "No, Wawa!" "Ok, we'll go in the Wawa tomorrow morning for coffee." To which Delanie argued, "but I want to go in the 7-11. It's so BIG in there. Lauren, I bet we'd lose you in there it's so big in there." "NO!!!" Lauren shouts in terror. (Both break down crying)
Only kidding, they didn't reach the crying stage last night. I thought Lauren would break down this morning on the way to Kennedy Krieger when we were having our typical in the car conversation. She told me a cheerfully, "I can't use this arm," while holding up her casted arm. I told her that she was going to practice using the other arm for a while, and then we'd use the left one again later. She replied, "nooo" in a sad voice and moaned like she was about to cry. "Look!! Lauren, outside the window, it's a BUS STATION! and a MAILBOX!" Lauren: "A MAILBOX?!?" She was immediately highly entertained by a mailbox. Have to love a two year old psyche.
Lauren really has continued to have an awfully big growth in speech with her constraint therapy, despite Delanie returning home. She informed me when she woke up that she is a big girl now and no longer likes her crib. When we stopped at the Wawa this morning, she said "Look at all these people getting out of their cars." (FYI: Delanie and I went to the 7-11 last night too because we never go there. I am a pushover.) In the car today, Lauren sang me such classics as "It's raining, It's pouring . . " and "Twinkle tinkle, go away, come again another day". Looking forward to hearing what else she has to tell us . . .
Thursday, November 12, 2009
Lauren's first week at Kennedy Krieger
It was a heartbreaking moment in the car Sunday (Nov 7) when Delanie was trying to get Lauren to give her a "righty high five" and bribe her with the promise of a sticker, as she likes to do. Lauren gave her a lefty high five instead and announced "I don't like righty" with the high-pitched most innocent voice of a two year old. Righty had suddenly fallen into the same category as lima beans, pony tails, brushing her teeth, and Baltimore City. It made me sad to think about how Lauren feels about her body not working as she'd like, and how she may feel about herself or her abilities in the future. Nevertheless, with hope, we started the Kennedy Krieger program this week.
It's Thursday now (Nov 12) and Lauren started her Constraint Induced Therapy Program at Kennedy Krieger on Monday. John took her in for initial evaluation and assessments Monday. She was fitted for her cast while watching tv and had no problem with that. It's waterproof thin fiberglass with a cushiony lining, and flexible with a seam entirely up one side so it can be removed and replaced easily. She didn't wear the cast home that night.
On Tuesday, I brought her in and the cast was to be placed on that day. She was taken away by Sara, her OT. I heard crying and urgent "I want my mommy" soon after that, which was crushing me. After a few minutes, Sara obliged her and came to get me. We went back to her therapy room together where Sara explained that Lauren and other kids are sometimes afraid of the cast at first, which she was unable to get on due to Lauren's struggling and tears. Lauren sat on my lap and I tried to bribe her with toys and a lolly pop while Sara went to get Erin, Lauren's PT to help put the cast on. Lauren was calmer when they came back. She cried as all three of us tried to open the cast and place her arm and thumb in the right spots, and demanded "I want my daddy, I want my daddy" now that she knew mommy was in cahoots with the therapists. The cast was successfully placed within seconds and Lauren chose purple tape to close it up.
I don't know what was going through Lauren's mind when we tried to put the cast on. Perhaps she thought her arm would get eaten up, or disappear and fail to exist after it was placed on. She didn't seem to mind the cast much almost immediately after it was placed and taped. She sat on my lap while Sara blew bubbles to her and we took turns blowing bubbles. Lauren tried to pop the bubbles initially with her casted arm, then with her right arm. She was able to hold the bubble blower with her right hand with help and seemed to enjoy dipping it in and out of the bubble bottle and letting it drip all over the floor and her mom.
Then she moved on to the toy closet with Sara and chose a hollow-plastic giraffe toy with blocks to play with. She carried it with her right hand with help over to the mat and sat down with Sara. They placed blocks into the giraffe head/neck with hand over hand posture to help her pick up and release the blocks with her right hand. She was very (and surprisingly) cooperative for 10 minutes or more before they chose a new toy. They eventually went for a walk with her tiny push shopping cart and disappeared down the hall. I went to sit in the lobby and watched as periodically she'd come pushing the shopping cart past the waiting room relatively happily.
She tolerated the rest of the first day very well. Erin and Sara were both really good about sitting down with me to discuss care for the cast and what Lauren should be doing at home - turning pages of books with right hand, hanging left casted hand out to dry after bath time. I like how Erin described what not to do. "Don't feed Lauren like a baby bird." No sticking food in her open mouth. She had to try to do things for herself first, but avoid frustration too. I found out that we should probably avoid calling her right hand "Righty" as we had been because we want her to feel like it's just another part of her body, not an outside labeled thing. They recommended setting her up for success so you don't have to tell her which hand to use, like by angling her so her right hand is by the toys or book, and using "tactile stimulus" like pushing her right elbow a little to get the movement started in the right direction.
The first challenge I found with taking her home that day was getting her coat/kitty cat sweatshirt on. I tried to pull it over the cast but found it very difficult since her new fiberglass thumb sticks up from the cast like a perpetual "thumbs up" sign. The second challenge was getting her in the car seat and her straps around her arms. I had to literally angle her whole body in reference to the cast to get her pushed under her arm straps.
She didn't seem to notice any of the challenging parts. She'd periodically say"what's this?" and hold up the casted arm in her cuter-than-Elmo voice. I'd tell her that it was her cast and it was hugging her arm, as her therapist taught me to. Then she'd say "Take it off" without a hint of anger or frustration. Since she doesn't have much concept of time, I'd just tell her "We'll take it off in a few days. It's going to help you get stronger for now".
Back at home, we were sitting and reading a board book. She was dutifully turning pages with her right hand (the back of it) and went to turn a page with her left hand in the cast. She thumped her cast against the hard page several times before saying "I can't use this arm" and looking up at me with curiosity. I told her, "That's the whole idea. Now you use the other arm, and later you'll use that arm again."
I think Lauren is eating up all of the one on one attention she's getting. She went right to sleep the first night with her cast, exhausted I think, actually. She woke up only one time, around 4am and told me that she couldn't find Hop-hop. When she found hop-hop, she couldn't get him tucked into the correct location in her crib. As soon as I helped her with that, she went right back to sleep. She woke up happy and does not seem to have much frustration at all so far, just questions.
It's Thursday now (Nov 12) and Lauren started her Constraint Induced Therapy Program at Kennedy Krieger on Monday. John took her in for initial evaluation and assessments Monday. She was fitted for her cast while watching tv and had no problem with that. It's waterproof thin fiberglass with a cushiony lining, and flexible with a seam entirely up one side so it can be removed and replaced easily. She didn't wear the cast home that night.
On Tuesday, I brought her in and the cast was to be placed on that day. She was taken away by Sara, her OT. I heard crying and urgent "I want my mommy" soon after that, which was crushing me. After a few minutes, Sara obliged her and came to get me. We went back to her therapy room together where Sara explained that Lauren and other kids are sometimes afraid of the cast at first, which she was unable to get on due to Lauren's struggling and tears. Lauren sat on my lap and I tried to bribe her with toys and a lolly pop while Sara went to get Erin, Lauren's PT to help put the cast on. Lauren was calmer when they came back. She cried as all three of us tried to open the cast and place her arm and thumb in the right spots, and demanded "I want my daddy, I want my daddy" now that she knew mommy was in cahoots with the therapists. The cast was successfully placed within seconds and Lauren chose purple tape to close it up.
I don't know what was going through Lauren's mind when we tried to put the cast on. Perhaps she thought her arm would get eaten up, or disappear and fail to exist after it was placed on. She didn't seem to mind the cast much almost immediately after it was placed and taped. She sat on my lap while Sara blew bubbles to her and we took turns blowing bubbles. Lauren tried to pop the bubbles initially with her casted arm, then with her right arm. She was able to hold the bubble blower with her right hand with help and seemed to enjoy dipping it in and out of the bubble bottle and letting it drip all over the floor and her mom.
Then she moved on to the toy closet with Sara and chose a hollow-plastic giraffe toy with blocks to play with. She carried it with her right hand with help over to the mat and sat down with Sara. They placed blocks into the giraffe head/neck with hand over hand posture to help her pick up and release the blocks with her right hand. She was very (and surprisingly) cooperative for 10 minutes or more before they chose a new toy. They eventually went for a walk with her tiny push shopping cart and disappeared down the hall. I went to sit in the lobby and watched as periodically she'd come pushing the shopping cart past the waiting room relatively happily.
She tolerated the rest of the first day very well. Erin and Sara were both really good about sitting down with me to discuss care for the cast and what Lauren should be doing at home - turning pages of books with right hand, hanging left casted hand out to dry after bath time. I like how Erin described what not to do. "Don't feed Lauren like a baby bird." No sticking food in her open mouth. She had to try to do things for herself first, but avoid frustration too. I found out that we should probably avoid calling her right hand "Righty" as we had been because we want her to feel like it's just another part of her body, not an outside labeled thing. They recommended setting her up for success so you don't have to tell her which hand to use, like by angling her so her right hand is by the toys or book, and using "tactile stimulus" like pushing her right elbow a little to get the movement started in the right direction.
The first challenge I found with taking her home that day was getting her coat/kitty cat sweatshirt on. I tried to pull it over the cast but found it very difficult since her new fiberglass thumb sticks up from the cast like a perpetual "thumbs up" sign. The second challenge was getting her in the car seat and her straps around her arms. I had to literally angle her whole body in reference to the cast to get her pushed under her arm straps.
She didn't seem to notice any of the challenging parts. She'd periodically say"what's this?" and hold up the casted arm in her cuter-than-Elmo voice. I'd tell her that it was her cast and it was hugging her arm, as her therapist taught me to. Then she'd say "Take it off" without a hint of anger or frustration. Since she doesn't have much concept of time, I'd just tell her "We'll take it off in a few days. It's going to help you get stronger for now".
Back at home, we were sitting and reading a board book. She was dutifully turning pages with her right hand (the back of it) and went to turn a page with her left hand in the cast. She thumped her cast against the hard page several times before saying "I can't use this arm" and looking up at me with curiosity. I told her, "That's the whole idea. Now you use the other arm, and later you'll use that arm again."
I think Lauren is eating up all of the one on one attention she's getting. She went right to sleep the first night with her cast, exhausted I think, actually. She woke up only one time, around 4am and told me that she couldn't find Hop-hop. When she found hop-hop, she couldn't get him tucked into the correct location in her crib. As soon as I helped her with that, she went right back to sleep. She woke up happy and does not seem to have much frustration at all so far, just questions.
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