There is a point when you know your strength might fail you. For me, my brief panic attack reminded me that perhaps I can't do this all on my own. Without you, my dear Internets, I would not have an outlet for the emotional portion of this journey. I feel unable to discuss the feelings attached to the events unfolding in my life with those actually present in my life. If I do have a particularly low moment and reach out for a helping hand, I am always met with a well-meaning response that is of no value to me. People say things like, "God is in control." You all don't know me that well, but I do believe God is in control....but I also know that it doesn't keep crappy things from happening in our lives. Really.Crappy.Things. God being in control doesn't change the fact that something is wrong with my baby, and nobody knows what it is. People are also fond of saying "Everything will be fine." Unless they are human MRI machines (how cool would THAT be?!?), who are also trained on reading the MRI results, then they cannot tell me everything is fine. It feels so patronizing. I think I'd prefer "Suck it up and deal.", because at least it is HONEST. Or "I don't know what to say." Or "I'm thinking of you." Or "I can imagine it is difficult." The point is, they don't have to say anything; I just need them to listen. But the things they choose to say shuts the door on any further communication.
Let me clear something up, I am not walking around with a bleeding heart, shoving it in people's faces. I am talking about people who in the past have been great sources of emotional support for me, and now that I need the support the most, it isn't there. I am not talking about crying in front of people (Lord, no.), I am talking about calling someone very close to me and saying "I'm kind of freaking out here." and being met with what is a well-meaning, but semi-crushing response.
I worry, because I do feel like perhaps the strength is starting to run out. If I am met with crushing news at the end of all of this waiting, I don't know how I will handle it, if all my strength has been used up already.
PS- Thanks for looking at my bleeding heart every time I shove it in your faces, you guys are the best. ;)
Saturday, September 30, 2006
Thursday, September 28, 2006
Falling Down
I spent part of the weekend putting together a montage of a few short videos I took during KayTar's last episode, complete with text slides labeling the main symptomatic behavior exhibited in each clip. I emailed it to the pediatrician and she emailed me back today. She asked me a lot of questions. It is hard to read emotion in an email, but to me she seemed a bit more worried, or I might have been reading into it, I'm not sure. She said she is going to present KayTar to the chief of pediatrics and the Children's Hospital. She also said that after seeing the video, she is starting to think about other diagnostic possibilities. She didn't mention what those possibilities are or why the video made her decide to present KayTar to the chief...that coupled with the fact that she asked so many questions made me panic. Actually panic, I think. When I read the email, I felt like I was falling down really quickly on the inside. I received it right before I had to pick BubTar up from school. My chest felt tight the whole time I was in the car and when I tried to breathe in deeply, I thought I was going to be sick. Thankfully, the feeling passed.
The chief of pediatrics at a Children's Hospital is what you might call a "big gun", and I am wondering why the video made her decide to pull out the big guns. I wonder what diagnosis she is thinking about now that would prompt such a decision. After seeing the video, does it rule out migralepsy? Does it make another diagnosis clearer? I feel more confused than I was. When I sent the video, I thought "Will she be able to note the change in behavior, since she doesn't see KayTar on a daily basis? Will she even know anything is wrong?" I was worried that the video wasn't going to show her anything that was helpful in diagnosing. Now I am wondering what part of the video sent up red flags? I have been describing these in as much detail as I can for months. Was I describing them wrong? Was there something key that she is seeing that I haven't mentioned? Have I accidentally lead them in a different direction than we should have been going? There are so many questions running through my mind, and I don't have an answer for a single one.
The chief of pediatrics at a Children's Hospital is what you might call a "big gun", and I am wondering why the video made her decide to pull out the big guns. I wonder what diagnosis she is thinking about now that would prompt such a decision. After seeing the video, does it rule out migralepsy? Does it make another diagnosis clearer? I feel more confused than I was. When I sent the video, I thought "Will she be able to note the change in behavior, since she doesn't see KayTar on a daily basis? Will she even know anything is wrong?" I was worried that the video wasn't going to show her anything that was helpful in diagnosing. Now I am wondering what part of the video sent up red flags? I have been describing these in as much detail as I can for months. Was I describing them wrong? Was there something key that she is seeing that I haven't mentioned? Have I accidentally lead them in a different direction than we should have been going? There are so many questions running through my mind, and I don't have an answer for a single one.
Tuesday, September 26, 2006
Grins and Giggles
Today I am going to pretend to be normal. I agonized about various KayTar related things all weekend, and I want a vacation from it today. (which means I'm not going to tell you that the tabs open on my Firefox browser say things like "Brain Tumor Society: Patient Resources" or "eMedicine - Migraine Variants") I'm going to create a wonderful post filled with pictures and videos of my sweet little children, and wait until tomorrow (or possibly tonight) before unloading all the worries that are balanced precariously atop my shoulders. So let's get started!
There....that should do it.
There....that should do it.
Friday, September 22, 2006
Piece
I spoke with the pediatrician today. I love her. She has such a calming effect on me, it is really miraculous in itself. She called the hospital and confirmed it was their mistake and that we are going to have to live with it. She said they are AWFUL at making up for their errors, but great at what they do. KayTar has a clean (which in itself was disputed) CT scan, which makes her ineligible for a rushed MRI. They don't see it as urgent. I asked her to call and see if they could give me a spot next week and bump someone up to my old appointment (a non-barfer). She is checking on that as well as calling a doctor friend of hers who has opened up a private MRI practice. He does accept pediatric cases, but she is unsure whether they have the ability to sedate. If they can sedate, she can get an appointment there next week. So all hope is not lost.
I explained that the main symptom KayTar exhibited on her Wednesday episode was drunkenness, and asked what part of the brain that would happen in and if that gives us any new clues. She said the cerebellum controls that type of thing, and it is actually fitting with a basilar migraine, which fits in with the whole migralepsy diagnosis. This makes us BOTH feel good, because we haven't quite been comfortable with the neurologist's diagnosis and the fact he has his mind made up. I looked up basilar migraines and it pointed to information on transient ischemic attacks . The symptoms for transient ischemic attacks are eerily similar to what happens to our dear KayTar, right down to the dizziness and head tilting and weakness in one side of the body. This scares me, because these are called mini-strokes and are caused by blood being cut off in part of the brain. They can signal a real stroke is coming. When I first found this information I was so excited. It was like "Yay! We're not all crazy, and we're actually on the right track.", but now I'm back to worrying. She is so young and vulnerable. We've let these things run their course every time, what if that was wrong? What if it is damaging her brain because of the lack of oxygen? Honestly, we couldn't get to the hospital and into a room before they are finished, they usually aren't more than an hour and the hospital is 30 minutes away and the ER takes forever...but I can't help but wonder. The thought of a diagnosis out there makes me happy, it does. She is just so young to be going through this...it makes me sad. What if we have been making the wrong decisions for her? What if this will permanently affect her? I feel so lost in all of this. I feel like our hopes of getting an answer have been lifted and dashed repeatedly. I feel weary and worried. I want to know what is wrong so badly, but I am a little afraid of the answers as well. If this is a piece of the puzzle, it is wonderful. We can start making informed decision from here on out. If this is the right piece, the meds WILL start helping. If this is the right piece, it can explain so much. If this is the right piece, maybe we can finally have some peace.
I explained that the main symptom KayTar exhibited on her Wednesday episode was drunkenness, and asked what part of the brain that would happen in and if that gives us any new clues. She said the cerebellum controls that type of thing, and it is actually fitting with a basilar migraine, which fits in with the whole migralepsy diagnosis. This makes us BOTH feel good, because we haven't quite been comfortable with the neurologist's diagnosis and the fact he has his mind made up. I looked up basilar migraines and it pointed to information on transient ischemic attacks . The symptoms for transient ischemic attacks are eerily similar to what happens to our dear KayTar, right down to the dizziness and head tilting and weakness in one side of the body. This scares me, because these are called mini-strokes and are caused by blood being cut off in part of the brain. They can signal a real stroke is coming. When I first found this information I was so excited. It was like "Yay! We're not all crazy, and we're actually on the right track.", but now I'm back to worrying. She is so young and vulnerable. We've let these things run their course every time, what if that was wrong? What if it is damaging her brain because of the lack of oxygen? Honestly, we couldn't get to the hospital and into a room before they are finished, they usually aren't more than an hour and the hospital is 30 minutes away and the ER takes forever...but I can't help but wonder. The thought of a diagnosis out there makes me happy, it does. She is just so young to be going through this...it makes me sad. What if we have been making the wrong decisions for her? What if this will permanently affect her? I feel so lost in all of this. I feel like our hopes of getting an answer have been lifted and dashed repeatedly. I feel weary and worried. I want to know what is wrong so badly, but I am a little afraid of the answers as well. If this is a piece of the puzzle, it is wonderful. We can start making informed decision from here on out. If this is the right piece, the meds WILL start helping. If this is the right piece, it can explain so much. If this is the right piece, maybe we can finally have some peace.
Thursday, September 21, 2006
No MRI?!
I started this post earlier, but I was a wreck and decided not to subject you all to the ravings of my overly emotional self.
Today was supposed to be my day off. My carefree-clean-the-house-do-laundry-forget about-all-the-KayTar-drama-for-24-hours-day. Well, I'll spare you the suspense: IT WASN'T.
Last night KayTar had another episode. It has been LESS than the usual two weeks. They are getting closer together. I dreamt about hospitals and ER's and CT scans and MRI's. This morning I woke up and stumbled to the coffee pot turned it on, then I realized the kids were both awake. BubTar was watching Playhouse Disney and had put Blue's Clues on his computer in KayTar's room for her. Usually I sit at my computer and drink my coffee while reading a few blogs, and I enjoy the blissful quiet. Not so much today. Almost directly after finishing my coffee, the phone rang it was the Children's Hospital on caller ID so I assumed it was the Feeding Clinic. YAY! But it wasn't. It was the MRI schedulers. There was no YAY. The lady on the phone informed me that my daughter is not eligible for a Saturday MRI because she has a history of vomiting (because of the episodes). They do not have an anesthesiologist on staff on Saturday (nurses only) and they can't sedate someone with a history of vomiting. Dandy. They pushed my MRI back a MONTH. I have to wait another MONTH, and my child is getting worse, not better. How can they do this? The only thing that has gotten me through the past month was looking forward to that MRI. Its been my freaking mantra "Just wait until the 23rd. You'll know on the 23rd." and I don't think I can do that for another month.
So I called the pediatrician's office, and immediately started crying (you don't know me that well, but I hate crying). My pediatrician was out of the office today (of all days) and I told them my story and they transferred me to referrals. The nice lady said to try another hospital for a quicker appointment (I told her to hold on about 3 times in the course of our short conversation to choke back tears and suck it up a bit). I called said-hospital and talked to a nice man for about 20 minutes regarding scheduling, then he took my insurance information and said "Oh...hold on." When he came back he said "You can only come to our hospital if Children's Hospital does not have the ability to DO a procedure, even if you have to wait for it." DANDY! So my hands are tied and my baby is getting worse. When my pediatrician gets in tomorrow, I will call and see if she can do anything, or if she thinks the neuro can push to get it sooner. I'd take a hospitalization if it meant we could get this MRI done. What if it is a tumor? It seems to be progressive, whatever it is, and the longer we wait the scarier it is. Yesterday the therapist said her head measures too small for her body, but she was satisfied when I said that we had an MRI on Saturday. We think she might have lost her third set of words...we haven't heard "sit" or "go" in weeks. She is down to zero words...but she has learned 1 word in sign. (yay!) I just kept saying "Don't freak out...wait for the MRI..." but now I don't have that and things are piling up in my mind. I'm swinging at the end of my rope here and it's killing me just to wait until tomorrow to talk to the pediatrician....I don't think I'll make it through another month of waiting.
Today was supposed to be my day off. My carefree-clean-the-house-do-laundry-forget about-all-the-KayTar-drama-for-24-hours-day. Well, I'll spare you the suspense: IT WASN'T.
Last night KayTar had another episode. It has been LESS than the usual two weeks. They are getting closer together. I dreamt about hospitals and ER's and CT scans and MRI's. This morning I woke up and stumbled to the coffee pot turned it on, then I realized the kids were both awake. BubTar was watching Playhouse Disney and had put Blue's Clues on his computer in KayTar's room for her. Usually I sit at my computer and drink my coffee while reading a few blogs, and I enjoy the blissful quiet. Not so much today. Almost directly after finishing my coffee, the phone rang it was the Children's Hospital on caller ID so I assumed it was the Feeding Clinic. YAY! But it wasn't. It was the MRI schedulers. There was no YAY. The lady on the phone informed me that my daughter is not eligible for a Saturday MRI because she has a history of vomiting (because of the episodes). They do not have an anesthesiologist on staff on Saturday (nurses only) and they can't sedate someone with a history of vomiting. Dandy. They pushed my MRI back a MONTH. I have to wait another MONTH, and my child is getting worse, not better. How can they do this? The only thing that has gotten me through the past month was looking forward to that MRI. Its been my freaking mantra "Just wait until the 23rd. You'll know on the 23rd." and I don't think I can do that for another month.
So I called the pediatrician's office, and immediately started crying (you don't know me that well, but I hate crying). My pediatrician was out of the office today (of all days) and I told them my story and they transferred me to referrals. The nice lady said to try another hospital for a quicker appointment (I told her to hold on about 3 times in the course of our short conversation to choke back tears and suck it up a bit). I called said-hospital and talked to a nice man for about 20 minutes regarding scheduling, then he took my insurance information and said "Oh...hold on." When he came back he said "You can only come to our hospital if Children's Hospital does not have the ability to DO a procedure, even if you have to wait for it." DANDY! So my hands are tied and my baby is getting worse. When my pediatrician gets in tomorrow, I will call and see if she can do anything, or if she thinks the neuro can push to get it sooner. I'd take a hospitalization if it meant we could get this MRI done. What if it is a tumor? It seems to be progressive, whatever it is, and the longer we wait the scarier it is. Yesterday the therapist said her head measures too small for her body, but she was satisfied when I said that we had an MRI on Saturday. We think she might have lost her third set of words...we haven't heard "sit" or "go" in weeks. She is down to zero words...but she has learned 1 word in sign. (yay!) I just kept saying "Don't freak out...wait for the MRI..." but now I don't have that and things are piling up in my mind. I'm swinging at the end of my rope here and it's killing me just to wait until tomorrow to talk to the pediatrician....I don't think I'll make it through another month of waiting.
Monday, September 18, 2006
Killer week!
I woke up this morning and realized this week is going to kill me. I can already feel it in my bones, and that's never a good start. Today in itself is a headache, because I have a parent/teacher meeting (which I already rescheduled once) at 3:00 which is also pick up time for BubTar. I ran through all of my various options all morning, agonizing about rescheduling or asking for more help from my already overtasked family and finally found a solution. I am picking him up early enough to drop him at his aunt's so I can run back to the school to have the meeting (it's 15 minutes both way *sigh* it could be farther, though). Luckily KayTar took her nap, so she will be nice and perky the afternoon instead of cranky and tired.
Tomorrow we have her regular DT appointment at 1pm, and at 2pm she has her PT evaluation. Someone will have to fetch BubTar for me because I won't be able to leave the house until 3 or later and he is released at 2:45. We also have a PIA meeting tomorrow night (its our school's PTA type thing).
Wednesday at 10am she has her nutrition evaluation, which means I can't drop him off for school because I will be here with KayTar.
Thursday is FREE! FREE!! YAY! I can clean my house and do laundry.
Friday KayTar had a well-baby visit to finish up her shots, but I rescheduled it because of our plans on Saturday.
Saturday=MRI DAY!!! Yay! This is better than a free day, honestly. We're all just dying to see the results. Her doctors' faces light up when we mention it. They are chomping at the bit, as are we. It feels like Christmas. Everyone is hoping to see SOMETHING that will give us a clue. The main point of interest is her language center, because she has lost those 2 sets of words and there is such a wide gap between receptive and spoken language levels. The biggest worry is it coming back totally clean...because then we're still every bit as lost. But at least it is here...we'll have it out of the way on Saturday. *sigh* I cannot wait.
Somewhere in there I am supposed to hear back from the feeding clinic to get our appointment scheduled. Well, I'm off to fetch the BubTar from school so I can scurry back to the meeting!
Tomorrow we have her regular DT appointment at 1pm, and at 2pm she has her PT evaluation. Someone will have to fetch BubTar for me because I won't be able to leave the house until 3 or later and he is released at 2:45. We also have a PIA meeting tomorrow night (its our school's PTA type thing).
Wednesday at 10am she has her nutrition evaluation, which means I can't drop him off for school because I will be here with KayTar.
Thursday is FREE! FREE!! YAY! I can clean my house and do laundry.
Friday KayTar had a well-baby visit to finish up her shots, but I rescheduled it because of our plans on Saturday.
Saturday=MRI DAY!!! Yay! This is better than a free day, honestly. We're all just dying to see the results. Her doctors' faces light up when we mention it. They are chomping at the bit, as are we. It feels like Christmas. Everyone is hoping to see SOMETHING that will give us a clue. The main point of interest is her language center, because she has lost those 2 sets of words and there is such a wide gap between receptive and spoken language levels. The biggest worry is it coming back totally clean...because then we're still every bit as lost. But at least it is here...we'll have it out of the way on Saturday. *sigh* I cannot wait.
Somewhere in there I am supposed to hear back from the feeding clinic to get our appointment scheduled. Well, I'm off to fetch the BubTar from school so I can scurry back to the meeting!
I'm sorry I cut them off.
That is something you NEVER want to hear from a 4 year old. Luckily, he only cut off his eyelashes on one eye. I didn't know what he had done, so I said "What did you cut off?" And he said "My eye Fings." He was very sorry. Evidently those little manicure scissors just scream to be use for giving your eyelashes a trim. He has, erm, HAD the most gorgeous eyelashes! He was so very embarrassed that he cried when it was time to go to the in-laws for dinner. "I don't want them to SEE me!! No, let's just stay here as a family." as he sobbed into my t-shirt. We told him we already made plans, and he had to live with the consequences of cutting off his lashes. We also told him nobody would notice but he splayed himself onto the couch and sobbed, "I don't want ANYONE to see me until they grow back!" So Josh said "Why don't you just wear your eye patch, buddy?" He popped up of the couch and said "Heeeeeey, that's a GREAT idea." so he wore his eye patch the rest of the night. In the car on the way he said "I hope nobody asks me about my eye patch." so when we got there and ran in telling everyone to ignore it. His grandma wanted to get him to show her so she could tell him it was no big deal, but when she asked why he was wearing it he shied away and said "I don't know. I don't want to take it off." It was really hilarious. He was so self-conscious all night, until he snuck into the kitchen when Josh was the only one in there and asked him how it looked and Josh said "Yeah, they're growing back in, just a few more days." (LIE!) And then BubTar got a boost of confidence and yelled "HEY EVERYBODY! EVERYBODY! I CUT OFF MY EYE FINGS, BUT MY DADDY SAID THEY GROWED BACK!" and he ran around showing everyone, who all said things like "You can hardly notice!" "I can't even tell!" So he was able to leave the eye patch at home today, thankfully. This morning he started asking about shaving...I think we need to keep our bathroom door locked from now on. :P
Wednesday, September 13, 2006
1 step forward, 3 steps back
I spent the better part of today preparing for the neurologist visit. I had to get BubTar ready for school and drop him off, which took up most of the morning...but once that was over I focused solely on preparations for the appointment. I put Katie down early, so she could get her nap and be perky for the doctor. She did not WANT to nap. I heard her babbling and laughing and rolling around in her crib almost the entire time I was getting ready. I gathered all the paperwork. I packed the mother of all diaper bags, with enough entertainment to get through a 6 hours plane ride. I had blocks, nesting cups, coloring books, a magnadoodle, Goodnight Moon, flashcards, and the iPod with 2 episodes of Blue's Clues and 1 episode of the Little Einsteins. There was no way she'd be fussy while we waited. I printed maps and put them ih the front seat of the car. I put the diaper bag in the car. Everything was ready but KayTar. So I watched the clock and at the exact right moment I went in to get her. She was asleep. Finally. And she had pooped. So, instead of seamlessly transferring her from her crib to the car, I had to change her diaper and wake her up completely.
We arrive at the neurology clinic and all I had to do was sign in. We went over by the pretend fish tanks and KayTar was happy as a clam. When our restaurant style pager went off (3 minutes later), she was very disappointed to leave her new fishie friends. Luckily she was distracted by the blinking lights on our pager.
The appointment itself was kind of unnecessary. I think we could have just as easily done it all by phone. He had his mind made up before we even came in. He said the meds can take up to 2 months to work, so we will probably see more episodes. He still believes it is migralepsy. He only asked me a few questions, and examined KayTar for a few minutes. It wasn't all a loss, though. He is referring her to a developmental psychologist. Evidently she is GOOD. She doesn't see patients on a regular basis, she mainly does research, but he said he's calling in a favor for KayTar. We are being referred to a Feeding Clinic as well. She will see a gastroenterologist, occupational therapist, speech language pathologist, and a dietitian there. He said EI does very basic evaluations and we need something more conclusive with KayTar. So now we're playing with the big dogs, I suppose. We also have another neuro appointment in December. And he told me to keep the genetics appointment in January.
I feel like everyone has these suspicions about what is going on with KayTar, but no one is telling me. Everyone feels there is more to the puzzle, but they aren't telling me what they suspect. Nobody is looking at our diagnoses and saying "That explains EVERYTHING! Good work." They are saying "KayTar needs to see this additional specialist." or "Let's try this." It is maddening in a way. Sometimes I look at her and think, is all of this necessary? Is someone just going to tell us one of these days, "Oh sorry about all of that, she's totally normal." but I don't honestly think that day is coming. I think the day when someone finally tells us something it might be quite different than that.
Oh, and we never opened the glorious diaper bag. So much for being prepared.
We arrive at the neurology clinic and all I had to do was sign in. We went over by the pretend fish tanks and KayTar was happy as a clam. When our restaurant style pager went off (3 minutes later), she was very disappointed to leave her new fishie friends. Luckily she was distracted by the blinking lights on our pager.
The appointment itself was kind of unnecessary. I think we could have just as easily done it all by phone. He had his mind made up before we even came in. He said the meds can take up to 2 months to work, so we will probably see more episodes. He still believes it is migralepsy. He only asked me a few questions, and examined KayTar for a few minutes. It wasn't all a loss, though. He is referring her to a developmental psychologist. Evidently she is GOOD. She doesn't see patients on a regular basis, she mainly does research, but he said he's calling in a favor for KayTar. We are being referred to a Feeding Clinic as well. She will see a gastroenterologist, occupational therapist, speech language pathologist, and a dietitian there. He said EI does very basic evaluations and we need something more conclusive with KayTar. So now we're playing with the big dogs, I suppose. We also have another neuro appointment in December. And he told me to keep the genetics appointment in January.
I feel like everyone has these suspicions about what is going on with KayTar, but no one is telling me. Everyone feels there is more to the puzzle, but they aren't telling me what they suspect. Nobody is looking at our diagnoses and saying "That explains EVERYTHING! Good work." They are saying "KayTar needs to see this additional specialist." or "Let's try this." It is maddening in a way. Sometimes I look at her and think, is all of this necessary? Is someone just going to tell us one of these days, "Oh sorry about all of that, she's totally normal." but I don't honestly think that day is coming. I think the day when someone finally tells us something it might be quite different than that.
Oh, and we never opened the glorious diaper bag. So much for being prepared.
Tuesday, September 12, 2006
Nerves
We have our long awaited neurologist appointment tomorrow. I am so relieved it is finally here, and at the same time I am totally nervous. I don't know what to expect, never having done this before. I don't know which questions he will ask or what information to bring along, so I will be up tonight typing/printing every piece of information he might find informative. Earlier this week, I spoke with KayTar's pediatrician and she said that it is great that we finally are seeing the neuro, but make sure he doesn't railroad me into accepting a diagnosis and that he is really listening to what I say and hasn't made his mind up prematurely. That freaks me out. I am soft-spoken, I hate confrontation, I hate decision making, and I am prone to accepting what anyone tells me. The thought that I have to go in there and make up my own mind about what is happening with KayTar, and making sure the doctor makes a correct diagnosis, when I really have no idea is frightening. I wish I could bring my pediatrician along. She is so supportive and wonderful and advocates for KayTar at every turn, I wish she could be there tomorrow. What if we don't have another neuro appointment for a very long time, if ever? What if nothing gets solved tomorrow and it is our one shot? Before Sunday, I just thought this appointment would be check-up to see how wonderfully the medication is working, but evidently that isn't the case. When I drop into the depths of this panic, I keep trying to picture the neurologist, with his gray hair and uni-brow and foreign accent KayTar finds so dreamy...and I think, is there really anything to worry about? The calm lasts about 45 seconds, but it is long enough to catch my breath. SIGH. I'd love to stay here all night and agonize over this...but medical histories are calling to me, so I best not keep them waiting any longer.
Sunday, September 10, 2006
BubTar
I haven't really posted much about BubTar, because the dramatic nature of the Katie situation occupies much of my brain power, but I figured it was time to let you meet him. He is a hilarious little guy with an amazing personality. He started PreK three weeks ago and he didn't even look back when I dropped him off...he just marched straight to class with his little backpack. I feel so old having a child in school. He's learning Bible verses, phonics (he'll be reading by December), cursive, the numbers (eventually all of his 1+ addition problems) and he's only in PreK for 3 hours per day. I'm amazed by this smart little guy.
Yesterday he asked Josh the meaning of life: "Daddy, why did God make us?" So we told him "Because God wanted to love us and have us love Him in return." and then he said "Oh...okay..." and kept playing like it was the most casual conversation in the world.
He loves music and movies and has a flare for both acting and singing. He can't just watch a movie, he has to say the lines and recreate the action. He's constantly singing, and he even performs songs for us with his little blue guitar.
He loves to tell jokes, although most of them don't make sense. He loves to learn and will sit for an hour working in his Kumon workbooks. He loves to read his Pre-Readers to us, and have us read to him. He is a social butterfly and makes friends instantly.
He loves his little sister so much and we've actually never had a problem with sibling rivalry. He loves to play with her and share with her. They are best buds. He makes us laugh at least 20 times per day.
When I go to tuck him in at night he hides under the blanket and pretends to be "Talking Sheet" and he interviews me about various subjects ("What's your favorite movie/song/TV show?") until I beg him to find BubTar for me, and then he comes back. He's so funny and imaginative.
He asked me to rock him in the rocking chair last weekend, and as I did I remembered rocking him in that chair as a newborn, with baby fuzz on his head and puppy skin on his neck and I wondered at the miracle that he is. I can't believe my little baby is such a big guy, but I'm glad he's still small enough to ask Mommy to rock him now and again.
Yesterday he asked Josh the meaning of life: "Daddy, why did God make us?" So we told him "Because God wanted to love us and have us love Him in return." and then he said "Oh...okay..." and kept playing like it was the most casual conversation in the world.
He loves music and movies and has a flare for both acting and singing. He can't just watch a movie, he has to say the lines and recreate the action. He's constantly singing, and he even performs songs for us with his little blue guitar.
He loves to tell jokes, although most of them don't make sense. He loves to learn and will sit for an hour working in his Kumon workbooks. He loves to read his Pre-Readers to us, and have us read to him. He is a social butterfly and makes friends instantly.
He loves his little sister so much and we've actually never had a problem with sibling rivalry. He loves to play with her and share with her. They are best buds. He makes us laugh at least 20 times per day.
When I go to tuck him in at night he hides under the blanket and pretends to be "Talking Sheet" and he interviews me about various subjects ("What's your favorite movie/song/TV show?") until I beg him to find BubTar for me, and then he comes back. He's so funny and imaginative.
He asked me to rock him in the rocking chair last weekend, and as I did I remembered rocking him in that chair as a newborn, with baby fuzz on his head and puppy skin on his neck and I wondered at the miracle that he is. I can't believe my little baby is such a big guy, but I'm glad he's still small enough to ask Mommy to rock him now and again.
Thursday, September 07, 2006
Diagnosis: SI with tactile defensiveness
KayTar had her long awaited evaluation yesterday and it went so well! Amazingly well, actually. She did things I didn't know she could do! They asked her to point to the goldfish in one of her books, and she DID IT! Then they use her animal flashcards and help up two at a time and would ask "Which on is the dog (or other animal)?" and she picked the right one four times!! I had no idea she had been actually paying attention or getting anything out of me playing flashcards with her, but she got dog, fish, cow, and duck correct! If I'm being honest, I stopped doing flashcards with her a while ago because she seemed like she wasn't paying attention or getting anything out of it, but know I know she was. She just does things differently and isn't as "engaging" as most "normal" children. I can't tell you how happy that makes me! She was able to do a shapes puzzle, and stack 3 blocks. She was able to put the nesting toys back together. She was social and happy the entire evaluation, really. She had fun "playing" with the evaluators.
I showed the occupational therapist the video of the shaving cream and described the "odd" reactions and behaviors she has been exhibiting and she didn't seem surprised. At one point she put on a latex glove to try and play with KayTar's mouth to see how she would react and as soon as she touched her cheek, KayTar gagged. The OT asked me if she normally gags when her face is touched and I said no, because she doesn't. So the OT took the glove off and set it on the ground and asked KayTar to pick it up. As soon as KayTar touched it, she gagged and dropped it. So there's one more weird thing to add to the list. *lol* The OT said she has SI (sensory integration disorder) with tactile defensiveness. It is INSANE how fitting this diagnosis is for KayTar. I picked up a book on it yesterday (because I'm one of those people) and they even have a picture in the book of how KayTar sits, because it is such a classic manifestation of SI. The OT said all of her delays can be traced back to SI, although at this point we are 100% sure that it does, because we haven't had the MRI or neuro appointment, but this might be all there is going on (besides the migralepsy). She said her lack of social interaction and those "autistic" qualities are caused by a fear of unexpected or unwanted touch. She is open with BubTar, Josh and I because she predicts our behaviors and trusts us to touch her in a way she is comfortable with. She can't trust other people and it fearful of unwanted physical contact. Even the fact that she covers herself in her blanket is symptomatic is SI, she is using it as protection from physical contact. It gives her senses a time out, because she like the way the blanket feels and it keeps other things from touching her.
SI explains why she needs time alone in her crib throughout the day, because otherwise she gets overloaded. She actually had to go to her crib with her blanket after all the playing, because she was overloaded. The OT said its great that we have already noticed that she needs that and it is very important to give her that "retreat" time and make sure she has her blanket when we are out so she can "protect" herself if needed. Her speech could be delayed because of her oral texture issues and the fact her muscles are underdeveloped because the lack of different foods. Her walking could be delayed because children with SI often "feel" gravity differently and have a hard time overcoming that.
This diagnosis is amazing. Although it is something she will deal with for life, by the time she is a teenager or adult, she will have learned how to protect herself and compensate for these things and will be fine. We have therapy ahead of us, but it will teach us all how to help Katie compensate and get what she needs out of the world.
The OT said that for KayTar unwanted or unanticipated touch makes her feel the same way you or I feel when a police car pulls up behind us with the sirens and lights on. Sheer panic. That is how she feels when she touches the shaving cream or when someone she doesn't trust tries to touch her or she gets some other negative tactile input. Her nervous system isn't like yours or mine, it is a whole new ball game with KayTar...but at least we know what ball game we're playing now. We are supposed to let her play with plain yogurt every day because it is the "stage below shaving cream", and we have to fill a giant Tupperware bin with uncooked rice and beans and have her sit in it daily and try to get her to the point where she will get in with only her diaper on. This is going to be quite the learning experience for all of us, but I am so excited that we can start helping her now.
KayTar is actually functioning at a 16-18 month level, except for her spoken language skills which is at 13 months, and her gross motor which the PT will evaluate next week. Her fine motor is right on at 18 months. I am so happy about all of this. I know I keep saying how amazing it is, but it IS! Today we did flashcards again and she learned about 5 animals. I'm so excited to be learning HOW she processes and learns so I can help facilitate that. Wow! I am ecstatic! We're on our way!!
I showed the occupational therapist the video of the shaving cream and described the "odd" reactions and behaviors she has been exhibiting and she didn't seem surprised. At one point she put on a latex glove to try and play with KayTar's mouth to see how she would react and as soon as she touched her cheek, KayTar gagged. The OT asked me if she normally gags when her face is touched and I said no, because she doesn't. So the OT took the glove off and set it on the ground and asked KayTar to pick it up. As soon as KayTar touched it, she gagged and dropped it. So there's one more weird thing to add to the list. *lol* The OT said she has SI (sensory integration disorder) with tactile defensiveness. It is INSANE how fitting this diagnosis is for KayTar. I picked up a book on it yesterday (because I'm one of those people) and they even have a picture in the book of how KayTar sits, because it is such a classic manifestation of SI. The OT said all of her delays can be traced back to SI, although at this point we are 100% sure that it does, because we haven't had the MRI or neuro appointment, but this might be all there is going on (besides the migralepsy). She said her lack of social interaction and those "autistic" qualities are caused by a fear of unexpected or unwanted touch. She is open with BubTar, Josh and I because she predicts our behaviors and trusts us to touch her in a way she is comfortable with. She can't trust other people and it fearful of unwanted physical contact. Even the fact that she covers herself in her blanket is symptomatic is SI, she is using it as protection from physical contact. It gives her senses a time out, because she like the way the blanket feels and it keeps other things from touching her.
SI explains why she needs time alone in her crib throughout the day, because otherwise she gets overloaded. She actually had to go to her crib with her blanket after all the playing, because she was overloaded. The OT said its great that we have already noticed that she needs that and it is very important to give her that "retreat" time and make sure she has her blanket when we are out so she can "protect" herself if needed. Her speech could be delayed because of her oral texture issues and the fact her muscles are underdeveloped because the lack of different foods. Her walking could be delayed because children with SI often "feel" gravity differently and have a hard time overcoming that.
This diagnosis is amazing. Although it is something she will deal with for life, by the time she is a teenager or adult, she will have learned how to protect herself and compensate for these things and will be fine. We have therapy ahead of us, but it will teach us all how to help Katie compensate and get what she needs out of the world.
The OT said that for KayTar unwanted or unanticipated touch makes her feel the same way you or I feel when a police car pulls up behind us with the sirens and lights on. Sheer panic. That is how she feels when she touches the shaving cream or when someone she doesn't trust tries to touch her or she gets some other negative tactile input. Her nervous system isn't like yours or mine, it is a whole new ball game with KayTar...but at least we know what ball game we're playing now. We are supposed to let her play with plain yogurt every day because it is the "stage below shaving cream", and we have to fill a giant Tupperware bin with uncooked rice and beans and have her sit in it daily and try to get her to the point where she will get in with only her diaper on. This is going to be quite the learning experience for all of us, but I am so excited that we can start helping her now.
KayTar is actually functioning at a 16-18 month level, except for her spoken language skills which is at 13 months, and her gross motor which the PT will evaluate next week. Her fine motor is right on at 18 months. I am so happy about all of this. I know I keep saying how amazing it is, but it IS! Today we did flashcards again and she learned about 5 animals. I'm so excited to be learning HOW she processes and learns so I can help facilitate that. Wow! I am ecstatic! We're on our way!!
Monday, September 04, 2006
Puppy Loooooooooooooove. :)
Let me start by saying Josh and I are suckers.
The birthday party Bubba attended on Saturday was right next to the place where we adopted our now one year old Dalmatian pup in February. On the drive up Josh says, "I've been thinking about getting another dog." and I shut him down pretty quickly, because we don't really need anything else that eats and poops. But I DID say that if we were to get a dog, which we WEREN'T, it would have to be a puppy...because my reproductive quota will not be filled for a while, not until KayTar is a functioning member of society (meaning: walking, talking, EATING). We decided to just go take a peek and see if Cyndi (the lady we adopted from previously) was in. I walked in a saw the SWEETEST puppy one earth and immediately all the no puppy talk flew out the window. We took her home immediately. Here is a picture of PupTar and KayTar:
Our first pup, PenTar, is a liver spotted Dalmatian, and PupTar is a liver spotted Dalmatian/pointer. They both have beautiful green eyes and I just KNOW they were meant to be siblings. There was no snarling when they were introduced and they are even sharing the kennel at night. They wrestle and romp all day, unless they are napping. I am in LOVE. Puppy love.
PupTar is not yet named. PenTar's given name is Penny, but we have this thing about making -Tar nicknames around here. So I thought Maggie would go nicely with Penny and DH agrees, but Bubba has taken to calling her Polka-Dots. It is INCREDIBLY cute when he says it, so I can't correct him. I think we might end up naming her Maggie Polka-Dots...so he can call her Polka-Dots, but when she's a grown up she'll have a more mature name as well. I think we're putting too much effort into naming a puppy, but its a nice distraction.
We had an amazing weekend. Friday night we went out and had Mexican food (as a family, not as a date, but the hot sauce tasted just as good) and my sister- in-laws came over to watch movies with me; Saturday we went to the birthday party and got a puppy, went out to dinner with our best friends, went out for coffee, came home and watched movies together; Sunday we had friends from out of town over to spend the day with us (they brought MORE Mexican food...mmmmmmm) and we ended the weekend with my little brother-in-law's birthday dinner. It was so busy! And it was filled with adult conversation! And Mexican food! It was amazing and a much needed break from being KayTar's secretary and full-time worrier. :) Plus we got a PUPPY!
PS: I think that from now on I'm referring to the boy as BubTar...its more fitting to the formula. :)
The birthday party Bubba attended on Saturday was right next to the place where we adopted our now one year old Dalmatian pup in February. On the drive up Josh says, "I've been thinking about getting another dog." and I shut him down pretty quickly, because we don't really need anything else that eats and poops. But I DID say that if we were to get a dog, which we WEREN'T, it would have to be a puppy...because my reproductive quota will not be filled for a while, not until KayTar is a functioning member of society (meaning: walking, talking, EATING). We decided to just go take a peek and see if Cyndi (the lady we adopted from previously) was in. I walked in a saw the SWEETEST puppy one earth and immediately all the no puppy talk flew out the window. We took her home immediately. Here is a picture of PupTar and KayTar:
Our first pup, PenTar, is a liver spotted Dalmatian, and PupTar is a liver spotted Dalmatian/pointer. They both have beautiful green eyes and I just KNOW they were meant to be siblings. There was no snarling when they were introduced and they are even sharing the kennel at night. They wrestle and romp all day, unless they are napping. I am in LOVE. Puppy love.
PupTar is not yet named. PenTar's given name is Penny, but we have this thing about making -Tar nicknames around here. So I thought Maggie would go nicely with Penny and DH agrees, but Bubba has taken to calling her Polka-Dots. It is INCREDIBLY cute when he says it, so I can't correct him. I think we might end up naming her Maggie Polka-Dots...so he can call her Polka-Dots, but when she's a grown up she'll have a more mature name as well. I think we're putting too much effort into naming a puppy, but its a nice distraction.
We had an amazing weekend. Friday night we went out and had Mexican food (as a family, not as a date, but the hot sauce tasted just as good) and my sister- in-laws came over to watch movies with me; Saturday we went to the birthday party and got a puppy, went out to dinner with our best friends, went out for coffee, came home and watched movies together; Sunday we had friends from out of town over to spend the day with us (they brought MORE Mexican food...mmmmmmm) and we ended the weekend with my little brother-in-law's birthday dinner. It was so busy! And it was filled with adult conversation! And Mexican food! It was amazing and a much needed break from being KayTar's secretary and full-time worrier. :) Plus we got a PUPPY!
PS: I think that from now on I'm referring to the boy as BubTar...its more fitting to the formula. :)
Friday, September 01, 2006
Aaahh Freak out!
I was on my birth club bulletin board tonight and I read an alarming (for me) post. Another child on the board was evaluated today and diagnosed with PDD-NOS. This child is WALKING, EATING, and says about three words. From what I have heard (from her mom,) the child is very interactive and has a good base of receptive language, which KayTar does not. The evaluators said this kid is 8 months behind, which means 10 months old developmentally, and KayTar is BEHIND her. All of a sudden, I am much more nervous about our evaluation. This forced me to look up the CHAT screening test for autism in toddlers. If you go to the list, KayTar has 2 no's in the upper half, and 3, maybe 4 no’s in the lower half (depending on if she likes the evaluator and will make eye contact). What does this mean? Is she autistic? Are we going to walk away on Wednesday with a diagnosis of autism?
It's not that it will be the worst thing in the world (definitely not)...its just shocking that this child brought back this diagnosis. But if this higher functioning child walks away with such a serious result, then what diagnosis will my KayTar come away with?
So I am worried once again. I know we'll make it through, it just seems like we have such a long way to go.
It's not that it will be the worst thing in the world (definitely not)...its just shocking that this child brought back this diagnosis. But if this higher functioning child walks away with such a serious result, then what diagnosis will my KayTar come away with?
So I am worried once again. I know we'll make it through, it just seems like we have such a long way to go.
Medication
We started KayTar's medication to control the migraines yesterday. She was a bit crabbier than normal, and she took a 4 hour nap. Once we passed 3 hours, I checked her frequently, but she didn't stir. Today she has been exponentially crabbier. Bubba keeps saying things like "Just give her a BOTTLE, Momma! She's soooo cranky." KayTar is the MOST easygoing child I have ever encountered (as long as you aren't messing with her routines). She rarely fusses unless she is ready to go to sleep, or she is frustrated. She's so laid back and sweet. I am a little afraid that this medication might change that. I don't want to lose her personality from being on the medication, but I also don't want her to continue having these episodes. The doctor said it might take 3 days or so for her to adjust, so we'll see how she is behaving next week. She has her first evaluation next week, and I want her to b herself for it. I don't want them to evaluate the side effects of the medication and not the child she normally is.
She was having some alone time in her crib earlier (she needs time on her own, she has since early infancy) and she started fussing so I checked her and there were "flowers" everywhere. I borrowed this term from the creative mind of Kari. KayTar is on Miralax for constipation, so I usually am not blessed with such a bouquet of "flowers"...it was a rare, ummm, joy. I called the doctor to find out if it was a side effect of the new meds, and the nurse assured me it wasn't. Obviously we need to lay off the Miralax until these "flowers" have withered away.
I am really looking forward to the weekend. Josh and I are going to dinner this evening (a date, gasp!) because I am DYING for Mexican food. Tomorrow Bubba has his first school friend birthday party. At the beginning of the week, he didn't know who this kid was...now they are best friends, or so I hear. Tomorrow night Josh and I are going out with our best friends (who married each other strangely enough). Sunday one of my friends who lives out of town is coming to spend the day with me! It should be GREAT!
She was having some alone time in her crib earlier (she needs time on her own, she has since early infancy) and she started fussing so I checked her and there were "flowers" everywhere. I borrowed this term from the creative mind of Kari. KayTar is on Miralax for constipation, so I usually am not blessed with such a bouquet of "flowers"...it was a rare, ummm, joy. I called the doctor to find out if it was a side effect of the new meds, and the nurse assured me it wasn't. Obviously we need to lay off the Miralax until these "flowers" have withered away.
I am really looking forward to the weekend. Josh and I are going to dinner this evening (a date, gasp!) because I am DYING for Mexican food. Tomorrow Bubba has his first school friend birthday party. At the beginning of the week, he didn't know who this kid was...now they are best friends, or so I hear. Tomorrow night Josh and I are going out with our best friends (who married each other strangely enough). Sunday one of my friends who lives out of town is coming to spend the day with me! It should be GREAT!
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