Well, the week is half over. Whew. Monday the swallow study at the local hospital went well. It was really really cool to watch. They strapped Eve into a foam chair (I wish I brought my camera!!) and fed her the food and drink that I brought that had been mixed with Barium powder. As she ate/drank they Xrayed her. It was sooooo cool to watch her Xray as she chewed and swallowed. They video taped the test and showed it to me again when it was over. Here's what the pathologist said:
Eve didn't aspirate at that time (but that doesn't mean she never does). Eve doesn't chew as much as she should (which makes it more dangerous if she does aspirate because that is a larger chunk going down the wrong tube). Eve has trouble using her tongue to move food around so we should present crunchy food on the side of her mouth, rather than have her bite it with her front teeth.
Eve uses two swallows to clear her palate.
Soooo....what does this mean? She's not the best eater in terms of technique. But so far it's not terribly problematic. we are to touch the sides of Eve's tongue when brushing her teeth to stimulate it to move side to side. Cold and flavorful foods will help Eve be aware of them in her mouth (hypotonia can be associated with decreased sensitivity).
Yesterday we went to the Orthotics place. Jason casted Eve's feet and legs (almost up to the knee) to make molds for her new orthotics. We are going to get similar ones to her current AFO's, but these come up over the top of the foot more. They should take about 2 weeks to come in.
I found out the other day that Eve laughs at daycare when the other kids get in trouble (especially Tucker). I'm not sure if that's funny or not! I don't want her to be a brat, but I like that she's happy. :)
Wednesday, June 25, 2008
Friday, June 20, 2008
sweet pea
Here's Eve pretending to be a sweet pea.
She thought this was pretty funny and so did we. She's been doing pretty well. Still not perfect with her straw, but better. We got a date for the EEG - it's next month. Next week will be busy. Monday is the swallow study. Tuesday she gets measured for new AFOs (ankle foot orthotics) because she has outgrown her old ones. That's pretty good because they lasted 10 months. Thursday I have an IEP (Individual Education Plan) meeting with her new school. Jim and I are going to ask about adding communication to her goals. We want to look into a communication device that could speak for Eve.
Monday, June 16, 2008
Thick it
I know I've been bad about posting lately. I think it's because the dog takes up my extra time (and I have a new course I am teaching this summer). I think I also wait until I have time to post pictures, too. Well, my brother emailed me for updates on Eve, so I thought I'd write and entry and just post pics later.
Eve is doing well. She is totally not sick anymore. She is still not using her straw well, but it's not as bad as the week she was sick. She has an appt for a "swallow study" at Athens Regional Hospital on Monday (the 23rd). I think they put barium in her food/drink and watch her swallow it on an Xray. They will be looking to see if she aspirates anything. Also, her speech therapist has given us some "Thick it" powder to stir into her drinks. As I mentioned previously, this is to help her feel the drink in her mouth so it won't dribble out. I think this will be an effective measure because she had no trouble last night sucking up a good portion of Jim's milkshake!! We also were given a lemon slushy mix to "wake up" her mouth before eating. We tried it last night, but didn't notice a difference. We'll try again, though.
Other than that, we are still waiting on the date of her EEG in Atlanta. I should hear soon. There have been no other incidences of night waking with the "jerks." (No, I don't mean her parents!)
Josie has really been coming along. We can see that she will turn into a fine dog. She's very smart. She hasn't had an accident in days, and we've taught her to ring a bell to go outside. She got the hang immediately. Now I am working on teaching her to lay down and eventually roll over. Our third (of 4) puppy class is tomorrow night. I wonder what she'll learn. She'll be so excited to see her puppy friends, though. She's been pretty good around the house. I think she has learned who is boss (and that it's not her).
Eve is doing well. She is totally not sick anymore. She is still not using her straw well, but it's not as bad as the week she was sick. She has an appt for a "swallow study" at Athens Regional Hospital on Monday (the 23rd). I think they put barium in her food/drink and watch her swallow it on an Xray. They will be looking to see if she aspirates anything. Also, her speech therapist has given us some "Thick it" powder to stir into her drinks. As I mentioned previously, this is to help her feel the drink in her mouth so it won't dribble out. I think this will be an effective measure because she had no trouble last night sucking up a good portion of Jim's milkshake!! We also were given a lemon slushy mix to "wake up" her mouth before eating. We tried it last night, but didn't notice a difference. We'll try again, though.
Other than that, we are still waiting on the date of her EEG in Atlanta. I should hear soon. There have been no other incidences of night waking with the "jerks." (No, I don't mean her parents!)
Josie has really been coming along. We can see that she will turn into a fine dog. She's very smart. She hasn't had an accident in days, and we've taught her to ring a bell to go outside. She got the hang immediately. Now I am working on teaching her to lay down and eventually roll over. Our third (of 4) puppy class is tomorrow night. I wonder what she'll learn. She'll be so excited to see her puppy friends, though. She's been pretty good around the house. I think she has learned who is boss (and that it's not her).
Tuesday, June 10, 2008
update
The rest of our weekend went well. We took Eve swimming and she loved it. LOVED it. It was fun for all of us - especially because we broke 100 degrees on Sunday. So I would say she is feeling better. I took her to the pediatrician on Monday for her followup. The urine culture came back negative for infection. But he was pretty concerned about the straw thing. He told me to call him in 2 days if it wasn't better and he'll call the neurologist. Last night Eve woke up in the middle of the night crying. But it sounded like she was having trouble breathing through her nose. Fearing that she was pressed up against her bed rail, I raced in to get her. Nothing was obstructing her breathing. She didn't have any mucous, and I couldn't figure out why she was so upset. I picked her up and she was doing this really weird rhythmic jerking of her body. Kind of like her whole body had hiccups. It happened about every second or two and lasted for less than 5 minutes. I got her settled back in bed and she went back to sleep and slept through the night. When I told Tracey about it, she suggested I call Dr. S because that might have been a seizure. He called me back this afternoon and asked a bunch of questions. He told me he wants to do an EEG and to call Dr. K (Neuro) and see if he wants it done in Atlanta or locally. I called and left a message and then spoke to a nurse. She said that if an EEG is done, it would be done in Atlanta. She's going to check with Dr. K and get back to me tomorrow. In the meantime we are going to stay on top of things as far as the liquid intake goes. We're going to try to get her to drink more viscous liquids through the straw to see if that helps her work it better. The idea is that if the liquid has more viscosity, then Eve will be more aware of it in her mouth and not let it dribble out or spit it out.
Saturday, June 7, 2008
trip to ER
Here are two pictures of Eve petting Josie. She enjoyed it very much.
Last weekend Eve lost her appetite and had a low grade fever. Monday she seemed better. Tuesday she was fussy and had little appetite and low grade fever. She even spit up a little, but I thought that was because she was eating in her stander with her bellyband on and had pressure on her tummy. After dinner she had massive diarrhea. Wednesday: very fussy and no appetite. Thursday: Less fussy and better (but not normal) appetite. Friday: Much better in morning. When Jim picked her up from daycare, the staff asked if we've been using the potty with Eve (We haven't lately) because she has been pointing to theirs and has had lots of dry diapers. We didn't think much of this. At dinner she was incredibly fussy. She wanted to eat, but cried when we brought her to the table. She wanted to drink, but cried when we offered her milk. She just wasn't happy with anything. We tried time outs, we tried consoling her, we tried Tylenol. Then we gave up and Jim held her while she struggled with her milk (more on that in a minute) and ate some mashed potatoes. When it was time for bed, Jim noticed that her diaper (which had probably been on for 4 hours) was bone dry. Now we started to worry. She missed 2 doses of her antibiotics (to prevent urinary infections) when she lost her appetite. What if her fussiness and non-wet diapers was a sign of something wrong? So we called the Dr. and he sent us to the ER. Because of her multiple medical issues, he didn't want to take the "wait and see" approach. So, they did some blood work and got a urine sample via cath(miserable experience for Eve). The blood was fine, and the urine was probably fine. There were some red and white blood cells in it, but under the limit of a Dx of infection. We talked about it with the ER doc and he suggested to treat her for a UTI until the urine culture comes back which will definitively tell us if she has a UTI. He felt it was better to treat her for an infection that she might not have, rather than not treat her for an infection that hadn't totally reared its ugly head. He gave her a dose of meds before we left and we picked up more at the pharmacy this morning. *sigh* She's still fussy today, but that could be because she was up until 1am last night (at the ER).
Back to the milk. So, I am pretty worried about this. One of the problems with the mito Dx is that we have to watch Eve for loss of skills or functioning - particularly when she gets sick. The way that I understand this (and I might be off the mark) is that if the cells are not producing the energy they should (which is the function of the mitochondria), they die. Enough cells die and you have system failure. Enough system failure and the individual dies. So, i guess when a mito person gets sick and they don't have the reserve energy to fight off the illness the way you or I would, then the person can backslide. So, Eve had the diarrhea on Tues night. Wednesday morning, I noticed that she had trouble using the straw to drink. She kept mouthing the straw and chewing it, but not really sucking anything up in it. I thought this was just because she was sick and weak. Well, she is still doing this. It's as if she has forgotten how to use the straw. When she does manage to get some liquid in her mouth, much of it dribbles right out. She clearly wants to drink, but has to work really hard and is struggling. Today at lunch I just poured her milk into a glass and let her drink it from that (with me holding it). She drank the whole glass. She had some appetite, but mostly wanted her milk. Soooo....I am wondering if the dry diapers are due to her not being able to ingest enough liquids. Perhaps some of the fussiness is due to frustration.
You know, you get this horrible diagnosis, but you manage to deal with it because nothing has changed. Well, now that I suspect this is a change, it makes it all so real. I don't want to watch my child slowly shut down. I don't want to spend my Friday nights in the ER because the smallest illness can be the biggest deal. I did not sign up for this. OK. enough pity party. When she wakes up from her nap we are taking her swimming. Hopefully it will be fun for all of us. I bought a little raft for her to float in, but I just read the Univ. pool guidelines and you can't bring that in. So, I guess we'll just save it for our visit to Grammie and Papa in August. I'll try to take pictures of her in her little halter-top Tankini, though.
Back to the milk. So, I am pretty worried about this. One of the problems with the mito Dx is that we have to watch Eve for loss of skills or functioning - particularly when she gets sick. The way that I understand this (and I might be off the mark) is that if the cells are not producing the energy they should (which is the function of the mitochondria), they die. Enough cells die and you have system failure. Enough system failure and the individual dies. So, i guess when a mito person gets sick and they don't have the reserve energy to fight off the illness the way you or I would, then the person can backslide. So, Eve had the diarrhea on Tues night. Wednesday morning, I noticed that she had trouble using the straw to drink. She kept mouthing the straw and chewing it, but not really sucking anything up in it. I thought this was just because she was sick and weak. Well, she is still doing this. It's as if she has forgotten how to use the straw. When she does manage to get some liquid in her mouth, much of it dribbles right out. She clearly wants to drink, but has to work really hard and is struggling. Today at lunch I just poured her milk into a glass and let her drink it from that (with me holding it). She drank the whole glass. She had some appetite, but mostly wanted her milk. Soooo....I am wondering if the dry diapers are due to her not being able to ingest enough liquids. Perhaps some of the fussiness is due to frustration.
You know, you get this horrible diagnosis, but you manage to deal with it because nothing has changed. Well, now that I suspect this is a change, it makes it all so real. I don't want to watch my child slowly shut down. I don't want to spend my Friday nights in the ER because the smallest illness can be the biggest deal. I did not sign up for this. OK. enough pity party. When she wakes up from her nap we are taking her swimming. Hopefully it will be fun for all of us. I bought a little raft for her to float in, but I just read the Univ. pool guidelines and you can't bring that in. So, I guess we'll just save it for our visit to Grammie and Papa in August. I'll try to take pictures of her in her little halter-top Tankini, though.
Wednesday, June 4, 2008
Puppy preschool
Josie went to puppy preschool last night. Thank goodness. I left feeling like I have direction and guidelines to follow. So I am more optimistic. The class was overload for me. We walk in and there are a circle of owners and pets. The owners are sitting on chairs and the pups are calmly laying or sitting at their feet. Miss Kathie tells me to grab a seat and step on Josie's leash so she only has enough room to comfortably stand. I am to drop a treat when she calms down and looks at me. Oh boy. I follow the instructions and end up with a demon dog twisting and struggling and panting and freaking out. Everyone must have looked at me and said a silent prayer of thanks that they don't have a dog like Jo. I was mortified. She totally didn't calm down for the longest time - and then, never for more than a few seconds.
We worked on walking with a leash and Josie actually did pretty well - provided she was guided by the treats. The instructor asked me if Jo is a Stafford. When I said yes, she raised her eyebrows and asked if I have dog experience. My heart sank. Crap, even the instructor thinks I am in for a world of pain. I feebly said that Jim has had dogs his whole life. Miss Kathie gave me the old, "Uh-huh." Towards the end of the class we played "pass the puppy." We all sat in a circle on the floor and held our puppy facing out in a position that is supposed to calm them. Then when all the dogs were calm, we passed to the left. I held every puppy in the class. I could almost see the other owners cringing when it was their turn to hold Josie. Fortunately, she was not the worst. I held two other pups that were not pleased with this exercise.
Then we got a whole list of instructions and homework for next week. It reminds me a lot of having to be tough when sleep training Eve. It's hard work and you feel mean - but the rewards are priceless. I also bent the ear of the instructor a bit after class and she gave me some encouragement and specific advice. If I use the spray bottle to correct Jo, I need to say "No" first, then spray 2-3 times at her head, and then look away. Apparently with a Stafford, if I keep looking at her it is a threat and a challenge. That explains a lot. We are also going to make Josie work for her food. I am to feed her out of my hand, but only if she is polite and doesn't maul me. If she bites or scratches 3 times in a feeding, then the meal is over - hungry or not. Apparently the dogs won't miss more than 2 meals before they figure it out. Our little sausage will be fine. So. I am feeling better about being an owner. I will certainly keep you posted. I have some cute pics of Eve petting Josie that I need to post.
Other news about Eve - we have an appt in the beginning of July for a consult with a geneticist who will do the DNA sequencing for Eve. I am very much looking forward to that.
We worked on walking with a leash and Josie actually did pretty well - provided she was guided by the treats. The instructor asked me if Jo is a Stafford. When I said yes, she raised her eyebrows and asked if I have dog experience. My heart sank. Crap, even the instructor thinks I am in for a world of pain. I feebly said that Jim has had dogs his whole life. Miss Kathie gave me the old, "Uh-huh." Towards the end of the class we played "pass the puppy." We all sat in a circle on the floor and held our puppy facing out in a position that is supposed to calm them. Then when all the dogs were calm, we passed to the left. I held every puppy in the class. I could almost see the other owners cringing when it was their turn to hold Josie. Fortunately, she was not the worst. I held two other pups that were not pleased with this exercise.
Then we got a whole list of instructions and homework for next week. It reminds me a lot of having to be tough when sleep training Eve. It's hard work and you feel mean - but the rewards are priceless. I also bent the ear of the instructor a bit after class and she gave me some encouragement and specific advice. If I use the spray bottle to correct Jo, I need to say "No" first, then spray 2-3 times at her head, and then look away. Apparently with a Stafford, if I keep looking at her it is a threat and a challenge. That explains a lot. We are also going to make Josie work for her food. I am to feed her out of my hand, but only if she is polite and doesn't maul me. If she bites or scratches 3 times in a feeding, then the meal is over - hungry or not. Apparently the dogs won't miss more than 2 meals before they figure it out. Our little sausage will be fine. So. I am feeling better about being an owner. I will certainly keep you posted. I have some cute pics of Eve petting Josie that I need to post.
Other news about Eve - we have an appt in the beginning of July for a consult with a geneticist who will do the DNA sequencing for Eve. I am very much looking forward to that.
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