Here I am looking at Emily's page trying to figure out what's missing...well could it be new pictures?! Duh! I have been horrible at downloading my pictures off the camera onto the computer let alone uploading them here. That is my goal for the week...picture!
Emily is doing fantasitc! As usual she has really good speech days and she has really bad speech days. She has become quite the silly girl though. I have decided to take Sign Language this semester to learn more about grammer and more vocabulary. I hope that I can share this with my eager to learn little Miss Pretty. She is have some difficulties sleeping. I am not sure if it is just the age or if she has some sensory issues still or a little of both.
She loves dance! We got her 2 little (I mean tiny) dance outfits, tap shoes and ballet shoes! She parades around the house all day long with them on! It's way, way too cute!
Her newest thing to say is "your meanie!" Which just makes me laugh everytime, since I am such a mean person! HA! She has also prefected the pout and tantrum. I am thinking that these are pretty much age appropriate (if not a little late). But none the less I have to laugh about them!
We are still working on potty trainning her. She does pretty well during the day, usually only one accident but night is a whole other story. She wears "night night panties" to bed & usually pee's out of them. I have tried several kinds...it doesn't really matter. I have learned to put a new one on before I get in bed, that way I have a better chance of not having any accidents.
We just went shopping for summer clothes. Can you believe it summer clothes in February!! Well little Miss scrawny buns is only wearing 3T-4T (depending). Cameron is wearing almost a 2T and there is only a 3 lb difference between them! Crazy!
Wednesday, February 24, 2010
Friday, January 29, 2010
The craziness of January!
Wow! Where to even begin. Emily's beloved ST isn't covered under our new insurance. Matt's company decided to switch providers from BCBS to Aetna. Well apparently Aetna feels there are enough in home speech therapists in our general area, so they won't pick up Amber's office. Really, if it's not one thing it's another! So we are now forced to either pay out-of-network costs, privately or find a whole new provider! I really have no other choice but to find another provider...as much as it kills me to.
With that said I guess I am going to look into the L.I.F.E Center. Its not too far away from where we live and will provide speech and additional services as needed. If L.I.F.E. isn't a good fit for us I am not sure where to even begin!
We are also taking Emily to a second Developmental Pediatrician. I didn't feel comfortable with the first. He really didn't seem interested in Emily and what was going on with her...just wanted to run tests. This new D. Pediatrician will take an hour and a half to two hours for her visit. She will be doing a consultation, testing (what ever she feels is needed) and results discussion. Of course we wont be getting in until mid March for this appointment but we are on the list for canceled appointments. I am hoping that we will get in a little earlier.
Unfortunately, we are see quite a bit of regression from Emily. She is having a hard time being intelligible even for Matt and I. Well, I guess we are taking 3 little steps forward and 2 big steps back! I think that is part of life with a Apraxic child.
On a totally different note...Cameron, Emily's little brother is going to be tested by the state for AzEIP (Early Intervention). I do not believe that he has Apraxia but he is severely delayed in speech. He is now 17 months with no real words. So here we go again! At least we are wiser and know much more about the system and how it works. It should be a really smooth transition and we know what to expect.
With that said I guess I am going to look into the L.I.F.E Center. Its not too far away from where we live and will provide speech and additional services as needed. If L.I.F.E. isn't a good fit for us I am not sure where to even begin!
We are also taking Emily to a second Developmental Pediatrician. I didn't feel comfortable with the first. He really didn't seem interested in Emily and what was going on with her...just wanted to run tests. This new D. Pediatrician will take an hour and a half to two hours for her visit. She will be doing a consultation, testing (what ever she feels is needed) and results discussion. Of course we wont be getting in until mid March for this appointment but we are on the list for canceled appointments. I am hoping that we will get in a little earlier.
Unfortunately, we are see quite a bit of regression from Emily. She is having a hard time being intelligible even for Matt and I. Well, I guess we are taking 3 little steps forward and 2 big steps back! I think that is part of life with a Apraxic child.
On a totally different note...Cameron, Emily's little brother is going to be tested by the state for AzEIP (Early Intervention). I do not believe that he has Apraxia but he is severely delayed in speech. He is now 17 months with no real words. So here we go again! At least we are wiser and know much more about the system and how it works. It should be a really smooth transition and we know what to expect.
Sunday, January 10, 2010
WOW! August, has it really been that long since I have updated here!
Emily is doing fantastic! She is such a intelligent little girl. I know that's what I am supposed to say because I am her mom but seriously she is a smart little girl. She may not be able to communicate all of her needs, all of the time but she can do so many things that other kids at her age cannot! She knows her ABC's, all of them no skipping or missing or forgetting. She has 100% letter recognition, lower and upper cases, meaning I can ask her what a letter is (randomly) and she is able to tell me. She can count to 24 (only skipping 17). She is also pre-reading, which means she tries to sound out words. This is not very common and I think it is due to how her little mind works and copes with the Apraxia. She is a very visual child, thus recognizing letters (and letter sounds). I think that is why she is beginning to pre-read. It is amazing! She is also really coming into her own, she loves to make believe, playing dress-up and barbies. By the way, she says on a regular basis "I'm a barbie girl". She got a massive barbie playhouse for Christmas from Santa (who was very nice this year). So many speech therapy opportunities! I am now considering getting her a speech program developed by a speech therapist who has been studying Apraxia for over 20 years. It's called the Kauffman Kit. It is fairly expensive so I will have to wait a little longer but I think that it is now time to get her on a program. She won a free month of dance lessons! Which just started last week. She is taking a pre-combo class, ballet, tap and tumbling. She has been dancing around the house for the last week and a half! We will see what thinks at the end of the month and possibly keep her in it. I think it would be good for her to continue, it will help her with motor planning that isn't related to speech. She is back at pre-school and absolutely loves it. She has a new teacher this year, Mrs. Albert. She is always talking about "my teacher Albert".
We are now officially Gluten-Free! I think it has been about 5 months. It has been a fantastic decision for our entire family. Emily's GI issues are not completely resolved but they are much better. Not only Emily is having success but so is Cameron, Hunter and Mommy! Most of our digestive issues are similar and we are all having great success in our own ways. Going GF is not a easy process, especially for 7 year olds who love peanut-butter and jelly sandwiches. We have learned how to make GF pizza and the kids have fallen in love with broccoli-cheese soup (the ONLY way I can get them to eat broccoli. I now have a few GF cookbooks and I am making homemade snacks (which Matt is in love with and addicted to).
Well, I think that gets us up-to-date for the most part. One of my goals this year is to try and write at least once a week in each of the kids blogs. We love sharing what is going on with us!
Emily is doing fantastic! She is such a intelligent little girl. I know that's what I am supposed to say because I am her mom but seriously she is a smart little girl. She may not be able to communicate all of her needs, all of the time but she can do so many things that other kids at her age cannot! She knows her ABC's, all of them no skipping or missing or forgetting. She has 100% letter recognition, lower and upper cases, meaning I can ask her what a letter is (randomly) and she is able to tell me. She can count to 24 (only skipping 17). She is also pre-reading, which means she tries to sound out words. This is not very common and I think it is due to how her little mind works and copes with the Apraxia. She is a very visual child, thus recognizing letters (and letter sounds). I think that is why she is beginning to pre-read. It is amazing! She is also really coming into her own, she loves to make believe, playing dress-up and barbies. By the way, she says on a regular basis "I'm a barbie girl". She got a massive barbie playhouse for Christmas from Santa (who was very nice this year). So many speech therapy opportunities! I am now considering getting her a speech program developed by a speech therapist who has been studying Apraxia for over 20 years. It's called the Kauffman Kit. It is fairly expensive so I will have to wait a little longer but I think that it is now time to get her on a program. She won a free month of dance lessons! Which just started last week. She is taking a pre-combo class, ballet, tap and tumbling. She has been dancing around the house for the last week and a half! We will see what thinks at the end of the month and possibly keep her in it. I think it would be good for her to continue, it will help her with motor planning that isn't related to speech. She is back at pre-school and absolutely loves it. She has a new teacher this year, Mrs. Albert. She is always talking about "my teacher Albert".
We are now officially Gluten-Free! I think it has been about 5 months. It has been a fantastic decision for our entire family. Emily's GI issues are not completely resolved but they are much better. Not only Emily is having success but so is Cameron, Hunter and Mommy! Most of our digestive issues are similar and we are all having great success in our own ways. Going GF is not a easy process, especially for 7 year olds who love peanut-butter and jelly sandwiches. We have learned how to make GF pizza and the kids have fallen in love with broccoli-cheese soup (the ONLY way I can get them to eat broccoli. I now have a few GF cookbooks and I am making homemade snacks (which Matt is in love with and addicted to).
Well, I think that gets us up-to-date for the most part. One of my goals this year is to try and write at least once a week in each of the kids blogs. We love sharing what is going on with us!
Friday, August 14, 2009
Catching Up!
Wow. It seems like I blinked & here we are a month later. So much has happened (as usual).
First off Emily had a upper & lower GI done. They took lots of samples of different areas of her GI tract. She was a trooper! I am so proud of her. Recovery was so much easier then the ear tubes. They told us that was because she was under for longer & the wake-up wasn't so abrupt. Well the results are that Emily has Gastritis & esophagus. So inflammation of the stomach & esophagitis. We still are not sure what kind of treatment plan we are looking at but it could have been worse. I think its more likely that the GI Doctor will want a dietary change then putting her on medications. We will talk to him soon about that.
Emily has started back to Preschool for the year! As expected she loves it. She has a new teacher this year who is incredible. She sends fun little things home for us to work on that are related to school. She also lets me know what Emily has been doing throughout the day. Emily has some new friends that she plays with on a regular basis & loves the arts & crafts. She doesn't cry anymore when getting on the bus but now turns around at the top & says "Bye, Mom".
We also celebrated a few birthdays. Mine was first. Which I got to go to a movie with just Matt! Then came Alex & Hunter's 7th birthday! Wow, I have 7 year old. We all got sick & had to cancel the party. Last was Cameron's first birthday. Emily kept saying "Emamee bir-p-ay" (Emily's birthday). She had so much fun... all of her friends were here, she got to help blow out the candle & help with presents. Everything a big sister should get to do!
Now we are just settling into finding a good routine for all of the kids. It's difficult with all of Emily's therapies, school, play groups & appointments. It seems like we find one that works & then something comes around to shake it up. We are getting used to it all though.
On a side note... The boys are now being Homeschooled through a online virtual public school. Which has been running smoothly. They are really enjoying it & we are spending more time together as a family. We also got a new van!
First off Emily had a upper & lower GI done. They took lots of samples of different areas of her GI tract. She was a trooper! I am so proud of her. Recovery was so much easier then the ear tubes. They told us that was because she was under for longer & the wake-up wasn't so abrupt. Well the results are that Emily has Gastritis & esophagus. So inflammation of the stomach & esophagitis. We still are not sure what kind of treatment plan we are looking at but it could have been worse. I think its more likely that the GI Doctor will want a dietary change then putting her on medications. We will talk to him soon about that.
Emily has started back to Preschool for the year! As expected she loves it. She has a new teacher this year who is incredible. She sends fun little things home for us to work on that are related to school. She also lets me know what Emily has been doing throughout the day. Emily has some new friends that she plays with on a regular basis & loves the arts & crafts. She doesn't cry anymore when getting on the bus but now turns around at the top & says "Bye, Mom".
We also celebrated a few birthdays. Mine was first. Which I got to go to a movie with just Matt! Then came Alex & Hunter's 7th birthday! Wow, I have 7 year old. We all got sick & had to cancel the party. Last was Cameron's first birthday. Emily kept saying "Emamee bir-p-ay" (Emily's birthday). She had so much fun... all of her friends were here, she got to help blow out the candle & help with presents. Everything a big sister should get to do!
Now we are just settling into finding a good routine for all of the kids. It's difficult with all of Emily's therapies, school, play groups & appointments. It seems like we find one that works & then something comes around to shake it up. We are getting used to it all though.
On a side note... The boys are now being Homeschooled through a online virtual public school. Which has been running smoothly. They are really enjoying it & we are spending more time together as a family. We also got a new van!
Sunday, July 12, 2009
New Article on Apraxia Reaserch
There is a new article out this month on Apraxia research. It is very interesting to me since Emily seems to fit right into what they are talking about.
SYNDROME OF ALLERGY, APRAXIA, AND MALABSORPTION: CHARACTERIZATION OF A NEURODEVELOPMENTAL PHENOTYPE
THAT RESPONDS TO OMEGA 3 AND VITAMIN E SUPPLEMENTATION
Claudia R. Morris, MD; Marilyn C. Agin, MD
Objective • Verbal apraxia is a neurologically based motor planning speech disorder of unknown etiology common in autism
spectrum disorders. Vitamin E defi ciency causes symptoms that overlap those of verbal apraxia. Polyunsaturated fatty acids in the cell membrane are vulnerable to lipid peroxidation and early destruction if vitamin E is not readily available, potentially leading to neurological sequelae. Inflammation of the gastrointestinal (GI) tract and malabsorption of nutrients such as vitamin E and carnitine may contribute to neurological abnormalities. The goal of this investigation was to characterize symptoms and metabolic anomalies of a subset of children with verbal apraxia who may respond to nutritional interventions.
Design and Patients • A total of 187 children with verbal apraxia received vitamin E + polyunsaturated fatty acid plementation.
A celiac panel, fat-soluble vitamin test, and carnitine level were obtained in patients having blood analyzed. Results • A common clinical phenotype of male predominance, autism, sensory issues, low muscle tone, coordination diffi culties,
>food allergy, and GI symptoms emerged. In all, 181 families (97%) reported dramatic improvements in a number of areas including speech, imitation, coordination, eye contact, behavior, sensory issues, and development of pain sensation. Plasma vitamin E levels varied in children tested; however, pretreatment levels did not reflect clinical response. Low carnitine (20/26), high antigliadin antibodies (15/21), gluten-sensitivity HLA alleles (10/10), and zinc (2/2) and vitamin D defi ciencies (4/7) were common abnormalities. Fat malabsorption was identifi ed in 8 of 11 boys screened. Conclusion • We characterize a novel apraxia phenotype that responds to polyunsaturated fatty acids and vitamin E. The association of carnitine defi ciency, gluten sensitivity/food allergy, and fat malabsorption with the apraxia phenotype suggests that a comprehensive metabolic workup is warranted. Appropriate screening may identify a subgroup of children with a previously unrecognized syndrome of allergy, apraxia, and malabsorption who are responsive to nutritional interventions in addition to traditional speech and occupational therapy. Controlled trials in apraxia and autism spectrum disorders are warranted. (Altern Ther Health Med. 2009;15(4):34-43.)
This was just the first page cliff notes on the article. Could it really be as easy as Vitamin E supplements & dietatry changes? It really just validates pressuing the GI issues for me. I am glad we havent given up. I also am now wondering if Emily doesnt have Celiacs (blood tests are never 100% accurate) or some kind of Malabsorbption disorder. Wow! I am so glad that there are Doctors out there finally beginning to realize that more reaserch needs to be done so we can really start to understand this disorder!
Here is the link to the full article
http://www.alternative-therapies.com/resources/web_pdfs/recent/0709_morris.pdf
SYNDROME OF ALLERGY, APRAXIA, AND MALABSORPTION: CHARACTERIZATION OF A NEURODEVELOPMENTAL PHENOTYPE
THAT RESPONDS TO OMEGA 3 AND VITAMIN E SUPPLEMENTATION
Claudia R. Morris, MD; Marilyn C. Agin, MD
Objective • Verbal apraxia is a neurologically based motor planning speech disorder of unknown etiology common in autism
spectrum disorders. Vitamin E defi ciency causes symptoms that overlap those of verbal apraxia. Polyunsaturated fatty acids in the cell membrane are vulnerable to lipid peroxidation and early destruction if vitamin E is not readily available, potentially leading to neurological sequelae. Inflammation of the gastrointestinal (GI) tract and malabsorption of nutrients such as vitamin E and carnitine may contribute to neurological abnormalities. The goal of this investigation was to characterize symptoms and metabolic anomalies of a subset of children with verbal apraxia who may respond to nutritional interventions.
Design and Patients • A total of 187 children with verbal apraxia received vitamin E + polyunsaturated fatty acid plementation.
A celiac panel, fat-soluble vitamin test, and carnitine level were obtained in patients having blood analyzed. Results • A common clinical phenotype of male predominance, autism, sensory issues, low muscle tone, coordination diffi culties,
>food allergy, and GI symptoms emerged. In all, 181 families (97%) reported dramatic improvements in a number of areas including speech, imitation, coordination, eye contact, behavior, sensory issues, and development of pain sensation. Plasma vitamin E levels varied in children tested; however, pretreatment levels did not reflect clinical response. Low carnitine (20/26), high antigliadin antibodies (15/21), gluten-sensitivity HLA alleles (10/10), and zinc (2/2) and vitamin D defi ciencies (4/7) were common abnormalities. Fat malabsorption was identifi ed in 8 of 11 boys screened. Conclusion • We characterize a novel apraxia phenotype that responds to polyunsaturated fatty acids and vitamin E. The association of carnitine defi ciency, gluten sensitivity/food allergy, and fat malabsorption with the apraxia phenotype suggests that a comprehensive metabolic workup is warranted. Appropriate screening may identify a subgroup of children with a previously unrecognized syndrome of allergy, apraxia, and malabsorption who are responsive to nutritional interventions in addition to traditional speech and occupational therapy. Controlled trials in apraxia and autism spectrum disorders are warranted. (Altern Ther Health Med. 2009;15(4):34-43.)
This was just the first page cliff notes on the article. Could it really be as easy as Vitamin E supplements & dietatry changes? It really just validates pressuing the GI issues for me. I am glad we havent given up. I also am now wondering if Emily doesnt have Celiacs (blood tests are never 100% accurate) or some kind of Malabsorbption disorder. Wow! I am so glad that there are Doctors out there finally beginning to realize that more reaserch needs to be done so we can really start to understand this disorder!
Here is the link to the full article
http://www.alternative-therapies.com/resources/web_pdfs/recent/0709_morris.pdf
Friday, July 10, 2009
GI Update
We are headed to surgery again. This Monday Emily will be going in for a lower GI scope. Her GI doctor is looking to see what he can find. Essentially all the tests have been run & we still have no answers so now we are doing investigative work. He plans take at least 45 minutes to look around & take biopsies from several different ares of her lower GI. We should have preliminary results right after the test & the biopsy results about a week later. We are hoping & praying that we are able to figure out what is going on with this little girls GI so we can move forward. Please keep us in your thoughts & prayers.
Follow up appointment for Ear Tubes
Emily had her follow up appointment this week for her ear tubes. Everything looks great!! The Doctor said the tubes were in place, a little wax in there but it wasn't causing any problems. He also retested her hearing...which came back within normal range! Finally one thing something go our way!
Saturday, July 04, 2009
4th of July!
As anyone who has worked retail knows, there are no such things as holidays (except Christmas & usually Easter). My husband is one of those lucky retail workers (plus he's a manager so he gets the worst shifts on holidays). We are usually able to make due but this 4th of July he worked until 8:45. Which left no time to go anyplace as a family to watch the fireworks. We are lucky to have a farm down the road that does a large firework display. When we first moved into this house you could see the fireworks from our bedroom, now the trees have grown in & it is not possible. So Matt pulled in the driveway at 9:15, I had the kiddos all loaded in the car & down the road we drove. Emily has never been to a 4th of July Celebration. The first year everyone was sick! Last year I was 9 months pregnant. Matt & I both wanted her to see them this year. As we are pulling out of the neighborhood we can tell that fireworks had started. We had to drive in the same direction they were going off in! The farm is 5 minutes away, no problem! The road we take is usually really busy (4 lanes, with a dirt middle divider) but it wasn't too bad tonight. I think most people are either someplace for the 4th or at home avoiding the 4th. We decided to stop on the side of the road (after passing many watchers already there). I let the kids unbuckle & Emily gets to sit in the front with Daddy! She was in awe! It was so cute. "Daddy, Daddy, look, look!" I wish I had brought the video camera. She was truly amazed by them. She was so upset when they were done & asked for more. We sat on the side of the road for maybe 15 minutes. It was the best 15 minutes of my day. To see her eyes light up when she saw the fireworks (not on TV) was priceless!
We hope everyone had a safe & wonderful 4th of July!
We hope everyone had a safe & wonderful 4th of July!
Friday, July 03, 2009
Zoo Trip!
We had a wonderful at the zoo last week for our field trip. Emily is the perfect age! She knows all the different animals & sounds (& signs). Her feet were moving so fast that her poor little body couldn't keep up & that spells disaster. Lots of falls & bumps & bruises! Still a great time. One of her favorite animals is the elephant. She tries so hard to say "elephant" but all that comes out is "epadnt". Close. She also got to feed a giraffe. She was so incredably brave. If Matt or I wanted to accompany her up there we would have had to pay as well (which seemed stupid but we followed the rules). Anyhow, she went up there with the boys & a guide. They showed them how to feed them & a little information about the giraffes. She walked right up, stuck her hand out & had no fear! The zoo here has a Farm with a petting zoo (goats, a cow & a horse). They had a blast petting the goats. Emily had to go around & touch every goat. She had a rubber brush (provided) & brushed as many as she could. We also played at this little hidden park by the wallaby's. She took some fabulous pictures...









Saturday, June 27, 2009
Before & After Ear Tubes
Forever & Ever
I am so sorry that it has been so long since I have updated here!! Wow, so much has happened. Here is the Medical stuff...
Emily had her ear tubes put in. Yay! It went fantastic. We got there very early. I had no idea how long it would take us but since I could us the HOV lane it took no time at all. So we checked in about an hour before our appointed check in time. No problem. We got to play for a while & watch a little Mickey Mouse Clubhouse (one of Emily's favorite cartoons). We went back for pre-op, which wasn't really back. There offices were kind of strange. The operation rooms were across the courtyard from the check-in. So anyhow, in pre-op we talked to 2 nurses, the doctor & the anesthesiologist. They all asked me the same questions... Why are you here, what are we having done today, what is her birthday, when was the last time she ate & do you have any questions. I guess now days everyone has to cover their own behinds! We had to wait for a while here. They gave her these adult sized, hideous green socks to wear with no skid soles. She wouldn't keep them on. I probably could have pulled them up to her thighs or beyond. Emily was really getting board in the pre-op room so I let her play with my camera & she took some beautiful pictures of me...NOT! Nothing like pictures taken by someone shorter then you. Since she was so board by the time the nurse came to take her back she was willing to go with just a "bye Mommy". I had to watch a stranger take my baby girl (accompanied by Monkers) by the hand & go through "the door". Oh it was crazy. I was told it would be a quick 5-10 minute procedure & some one would come & get me once she was in recovery. I went out to the courtyard for some air. There was a nice man who's daughter was having her tonsils taken out offer me a paper to read (he had 2). I think I got through one article & started another when the Doctor came out to talk to me. Everything went good. She had lots of really thick fluid in there. He was able to get it all out but had to do a little extra "cleaning". He also said that it usually isn't that thick so the fluid had been there for a long time. We talked about the ear drops, no swimming for 4 weeks & what to do if I think she is getting a ear infection. He said the nurse will be out in a minute to take you back to her. The nurse was out right after the Doctor to take me to my baby. We walk into recovery & she says "Follow the screaming. That ones yours!" Poor Emily was freaked out!! Even once I was there & holding her she was crying for probably 10 minutes. She refused to eat or drink anything(even a grape otter pop)! I am pretty sure that they are supposed make them have something before they release them but since it had been awhile & she was very stubbornly refusing, they sent her home. Once we got to the car I was able to get her to eat the otter pop. By the end of the day she was pretty much back to herself.
We have also seen the Developmental Pediatrician. He supports our ST's diagnosis & wants Emily to have a MRI. Since Apraxia is a Neurological Speech Delay they like to make sure that there are no other issues neurologically speaking. Apraxia will not show up on the MRI (just a little info there for you). They are still unsure of why or where it is. Some research points to a chromosome but it hasn't been officially stated. Anyhow, I haven't set up the MRI yet but it should be soon.
Emily had her ear tubes put in. Yay! It went fantastic. We got there very early. I had no idea how long it would take us but since I could us the HOV lane it took no time at all. So we checked in about an hour before our appointed check in time. No problem. We got to play for a while & watch a little Mickey Mouse Clubhouse (one of Emily's favorite cartoons). We went back for pre-op, which wasn't really back. There offices were kind of strange. The operation rooms were across the courtyard from the check-in. So anyhow, in pre-op we talked to 2 nurses, the doctor & the anesthesiologist. They all asked me the same questions... Why are you here, what are we having done today, what is her birthday, when was the last time she ate & do you have any questions. I guess now days everyone has to cover their own behinds! We had to wait for a while here. They gave her these adult sized, hideous green socks to wear with no skid soles. She wouldn't keep them on. I probably could have pulled them up to her thighs or beyond. Emily was really getting board in the pre-op room so I let her play with my camera & she took some beautiful pictures of me...NOT! Nothing like pictures taken by someone shorter then you. Since she was so board by the time the nurse came to take her back she was willing to go with just a "bye Mommy". I had to watch a stranger take my baby girl (accompanied by Monkers) by the hand & go through "the door". Oh it was crazy. I was told it would be a quick 5-10 minute procedure & some one would come & get me once she was in recovery. I went out to the courtyard for some air. There was a nice man who's daughter was having her tonsils taken out offer me a paper to read (he had 2). I think I got through one article & started another when the Doctor came out to talk to me. Everything went good. She had lots of really thick fluid in there. He was able to get it all out but had to do a little extra "cleaning". He also said that it usually isn't that thick so the fluid had been there for a long time. We talked about the ear drops, no swimming for 4 weeks & what to do if I think she is getting a ear infection. He said the nurse will be out in a minute to take you back to her. The nurse was out right after the Doctor to take me to my baby. We walk into recovery & she says "Follow the screaming. That ones yours!" Poor Emily was freaked out!! Even once I was there & holding her she was crying for probably 10 minutes. She refused to eat or drink anything(even a grape otter pop)! I am pretty sure that they are supposed make them have something before they release them but since it had been awhile & she was very stubbornly refusing, they sent her home. Once we got to the car I was able to get her to eat the otter pop. By the end of the day she was pretty much back to herself.
We have also seen the Developmental Pediatrician. He supports our ST's diagnosis & wants Emily to have a MRI. Since Apraxia is a Neurological Speech Delay they like to make sure that there are no other issues neurologically speaking. Apraxia will not show up on the MRI (just a little info there for you). They are still unsure of why or where it is. Some research points to a chromosome but it hasn't been officially stated. Anyhow, I haven't set up the MRI yet but it should be soon.
Tuesday, June 09, 2009
Tomorrow is the BIG day
Emily will be getting ear tubes tomorrow! Wow, I am nervous & excited all at once. We found out yesterday that they wanted to do it on Wednesday... aagggg. Organizing a babysitter for 3 kids at the crack of dawn in 2 days is crazy. But I am lucky to have good friends who are able to help out. Originally the surgery was scheduled for 8:30 but changed at the last minute to 10:15. I thought for a moment that I would be able to get a little more sleep.
No! Now I have to drive in rush hour instead of before rush hour!! So I am leaving our house at 5:45ish, drop the boys off by 6:15ish, be on the road by 6:30 (no later). Yahoo Maps timed the drive to 1 hour 30 minutes (exactly)! That doesn't include traffic so I am hoping 2 hours will do the trick!
I know this is going to be wonderful for her speech! She has been doing so incredibly good & I cant wait to see her continue & progress even more!
Well, I am off to make Emily a snack since she cant have any food after midnight. I am hoping to get something good in her!
Thursday, June 04, 2009
Long time...
Wow, has it really been that long since I posted?! Apparently.
We have gotten Emily GI results back...negative on the Celiacs. For me that is great news but also frustrating news. I am extremely happy that she doesn't have Celiacs, it is a life changing diet. But I also am frustrated because we are back to the "I don't know" whats wrong with her GI system. She is now on a no dairy, no soy diet. She seems to be doing well with it so far. Her stools have firmed up a little but they are still not "normal". I have a call in to find out what the next round of tests will be & when he would like to have them done.
We have been to the ENT as well. Emily will be getting tubes put in her ears to drain the fluid that has been there for who knows how long. The doctor doesn't believe that she has any hearing loss due to the fluid which is wonderful news! She didn't pass the hearing test he gave her but he was confident that it was due to the fluid. He said she is walking around hearing things like you would if you always had your fingers stuck in your ears. That muffled sound. That is probably why we think her speech is dull sounding. Amber our ST said this doesn't change the diagnosis but will more than likely help Emily to hear the right sounds & repeat the right sounds. We are hopeful that is crisp up her speech (not perfectly but maybe more intelligible).
We have a Developmental Pediatric appointment next Friday. We are hoping that they will give us a "Doctor" diagnosis of Apraxia. For some reason beyond my understanding Amber's (who should diagnosis Emily & who did) diagnosis wont be taken by either our insurance or our school district. I don't get it! Anyways we are getting a medical diagnosis so we have all our ducks on a row (just in case).
I guess that is all for now. Emily is on summer break oh yeah...We had a IEP meeting again. Emily has been changed from PLD (Preschool Language Delayed) to PSD (Preschool Sever Delay). They changed her category for two reasons: one they had to observe her in the classroom setting since they didn't do any testing & two it helps her keep her spot in the preschool classroom since they are restructuring the preschool program in the district. So she qualifies for preschool next year & will be getting a whopping 90 minutes of ST a month (really what does that help) in the classroom! Plus we will have our private SLP Amber here at least for 1 hour each week (for now split into 2 sessions per week).
Now I am done!
Monday, May 18, 2009
Pediatric GI
Just as I thought. Emily's GI Doctor had a full CBC ran to check for any issues. He also added a Celiacs test & several protein tests. The poor baby will have to have a endoscope if her Celiacs test comes back positive & an endoscope if it doesn't. They have to sedate her for it. I am not so happy about that but it has to be done...but she will also be sedated for the ABR (hearing test). Well what can I really do, the tests need to be ran so...
Now we are just waiting for results. It could take up to two weeks to find out the results but I am hopeful that we will hear back this week! The test were done through Phoenix Children's Hospital so I hope it wont take forever!! That's all for now.
Now we are just waiting for results. It could take up to two weeks to find out the results but I am hopeful that we will hear back this week! The test were done through Phoenix Children's Hospital so I hope it wont take forever!! That's all for now.
Friday, May 15, 2009
Pages
It is so funny. As I am looking at the blog today I never imagined that I would be able to fill the pages. I never thought I would have anything to say. I never thought I could go on & on about anything. I have never been good at writing or keeping a diary but that is just what this is. Its a diary all about Emily. I feel horrible because for now I have singled her out. I wish I was able to keep up on all the things that Alex, Hunter & Cameron just as well as I do here. Right now they just aren't doing as much. Okay well Cameron is doing thing so quickly I don't think I could keep up with him. Right now Emily's needs are what we are facing head on! They are at the front of everything we do. They are what I think about when I wake up & when I go to bed. Once we have settled all of them & in a routine maybe I will be able to focus more on blogging about the other kiddos! Look here... Another paragraph!
Pediatric GI!
We are off to the Pediatric Gastroenterology (GI) today! Emily had seen one regularly as a baby mostly due to her failure to thrive & stools. He discharged her as a patient when she was about 2 years old. Here we are going back again still due to her digestion. Emily at 3 years old rarely has a solid stool. Normally it ranges from soft (like a infant) to diarrhea. She is always grabbing down there saying "oowwee". She is still unable to tolerate milk. She has grown in height & weight. At her last visit she was "following her own curve" for weight & in the 20% for height according to her Pediatrician. We have a friend whose daughter is one week older then Emily & has always been at the same height & weight as her. She just had her 3 year appointment & was up to the 25% for both height & weight. So I am hoping Emily is right there with her. The major difference between Emily & her friend is Emily has no meat on her. She has extremely scrawny arms & legs. She also has a distended belly. Which is normal at Cameron's age but Emily should have outgrown it by now.
So here we are going to the GI. Not b recommendation of any other Doctors but by the fact that Emily never grew out of the reasons why she was going as a infancy/toddler but yet the GI dismissed her. We now have a new GI that Cameron sees & I love him! He briefly talked to me about Emily at one of Cameron's appointments & asked me to bring her in so that he could thoroughly look at her & run tests. The major test he is going to run is for Celicas Disease. Yep, been there done that but I also found out that it isn't accurate until the age of 3. So we are off to the Doctors this morning then probably to get her blood drawn. I am honestly not sure what I am hoping for. We have too many GI issues (Emily, Cameron, Hunter & Me) to just ignore it. In some ways I hope that the test comes back positive for Celiacs because an answer & a clear cut fix to hopefully all of our GI issues. On the other hand Celiacs is a very difficult & expensive diet. No wheat! Wheat is in everything! And I mean everything!! Our lives would change. Right now we will just have to wait & see.
Sunday, May 10, 2009
Wow, that last post was a long one!! I also wanted to mention that Emily has surpassed me on the ability to learn signs. I cant keep count anymore but I believe she is close to 350 maybe higher. There are times when I have to ask her to show me what she wants because I am not learning them at the incredible rate that she is. I do have to give major credit to Signing Time. They have a wonderful product that is fun & learning all in one. Take a look (there are samples of the videos on the website).
www.signingtime.com
Saturday, May 09, 2009
Crazy, Crazy Busy!
Wow how time flies. We have been so busy that I am not sure if I will remember everything that has been going on.
Well we all heard about Emily's Birthday Party & then the food poisoning. We had a nice week & a half to recover... then Grandpa Jerry came for a visit! It was a wonderful surprise. He called on Monday & was here on Thursday. We did all sorts of things while he was here. We built a shed & fence to go around the a/c (so the dogs couldn't eat the wires). We also went to the park, ran errands & played outside a whole lot! Which was lots of fun (since now it is ridiculously hot outside). When Grandpa Jerry left I had to finish up on the Spring Spectacular Basket for the boys class!! Now on to the major stuff...
We got a notice from Emily's pre-school starting we had a IEP meeting at the end of May. It stated the reason for the meeting was to "review existing data & determine eligibility" & "review IEP". I flipped. We just finished the last IEP in the middle of March, Emily hadn't started school until the 30th of March & she had only attend like 14 days of school total!! What in the world! Literally I was fuming, determine eligibility!?! I called the school & talked to the teacher, who gave me the run around & absolutely no answers. So I asked her to have the district representative call me. When she called we talk for a while, essentially Emily doesn't have to worry about being dropped from the program as long as the team determines she need to keep services. To break it down, basically what I was told is when we did her first IEP she was coded as a PSL (which means Preschool Speech/Language Delay). She tested one and a half deviations below the average child her age & is unintelligible to a person who is unfamiliar with her. So the district representative said that they want to change Emily's coding to PSD (which means Preschool Sever Delay). She tested 3 deviations below the average child her age & is above the age of 3 but not 5. She also told me that there where several kids (Emily included) that were boarder line between the 2 different coding's so they went with the PSL until they could observe them in a classroom setting. She stated that all children coded PSL would lose preschool & be offered ST in home for 1 hour each week. But the children who are coded PSD will continue preschool services. To me that's great that Emily should be able to continue services (as long as our IEP goes as planned) but why didn't you code her correctly to begin with! I am moving on from this (I could literally go on & on about it).
I had mention a while ago that Emily had hearing test with AzIEP. It came back failed on both ears. Well we went to her Pediatrician to finally get her Apraxia Diagnosis in her medical charts & get her in to see either a Developmental Pediatrician or a Neurologist. Essentially I need a medical diagnosis for both the school & insurance company. Even though our SLP is truly the one who should be diagnosing (& the one who did). Anyhow, we also discussed how Emily failed the AOE testing that AzIEP did. I asked if she would call the ENT & try to get us in earlier, which she had no problems doing. But she wanted to run another test on Emily's ears hoping it would help us get in faster. It was called a Tympanometry, what it does...
Tympanometry is an examination used to test the condition of the middle ear and mobility of the eardrum (tympanic membrane) and the conduction bones by creating variations of air pressure in the ear canal.
A tone is generated by the tympanometer into the ear canal, where the sound strikes the tympanic membrane, causing vibration of the middle ear, which in turn results in the conscious perception of hearing. Some of this sound is reflected back and picked up by the instrument. Most middle ear problems result in stiffening of the middle ear, which causes more of the sound to be reflected back. B 

Type A tympanogram is considered normal. There is a normal pressure in the middle ear with normal mobility of the eardrum and the conduction bones.
Type B tympanogram may reveal fluid in the middle ear , perforation of the tympanic membrane, scarring of the tympanic membrane, lack of contact between the conduction bones of the middle ear or a tumor in the middle ear.
-http://en.wikipedia.org/wiki/Tympanogram
Emily's results look similar to B. Except that in the left ear her "line" is below the box & her right ear didn't even register! Yikes! So apparently that is not so good. The Doctor believes it could be fluid that needs to be drained. As usually they don't tell you everything but me being me I do my research. Before this appointment & test was done I was sure she had fluid that would need to be drained. I do know that fluid sitting in the ear can cause hearing loss. So not knowing how long the fluid has been there (assuming its fluid) she could possibly have hearing loss. Right now we have a appointment with a ENT at the end of the month (hopefully sooner). I am positive he will do the ABR on her now (with out me having to ask) & then go from there).
This coming Friday we have a GI appointment for Emily to discuss her slow growth, allergies & stools. We are probably looking at getting a Celiacs test done to determine if that is the culprit. If her blood work comes back positive then she will have to have a GI scope (ewww poor baby). It is the only true way to diagnose Celiacs. More to come from that.
We are also getting a appointment for the Developmental Pediatrician. Like I mention before to diagnose her with Apraxia (medically). I am hoping that we can get this done quickly & not have it drawn out. To be honest between her & Cameron & their darn specialists, I am tired! Right now we have at least one appointment a week (if not two)!
I think I have covered all of the high & low points (& that was mostly just Emily). Cameron had a GI appointment & is on new medication (due to insurance) & will have reflux for at least 6 months to a year longer. We are both now on a milk & soy free diet! Yippee! Alex & Hunter are great!
Wednesday, April 22, 2009
Monday, April 20, 2009
Birthday, Easter & Buckets
What a crazy few weeks we have had here. I am not even sure when it started but I do know that my beautiful baby girls 3rd Birthday fell right smack dab in the middle of it!
For her Birthday she picked Minnie Mouse! She loves Minnie Mouse! I couldn't find a Minnie Mouse Cake pan this year so I created my own Minnie Mouse cake & used the colors from her other decorations! I think it turned out cute. I am definitely not ready to compete for a prize but the kids sure did like it! I made 3 different types of cake on the 3 different levels. The bottom was a yellow cake, the middle was chocolate & the top was strawberry. The boys thought the purple frosting tasted differently so Matt told them it was purple nurple flavored (it's from a cartoon). Anyways, they totally believed him & told everyone at the party! It was so cute! I tried to tie Easter in to her party by doing a Easter egg hunt as the main game. We had so much rain the days leading up to the party that I was afraid we wouldn't be able to do it (at least outside). Thank goodness the sun was out that morning & by the time we wanted to hide the eggs it was mostly dry! I had 3 people outside hiding eggs & all of the kids were trying to cheat & look through the shades! My Mom took some great pictures of our little cheaters. Emily got to be the first one out the door...since it was her Birthday, then the little kiddos & then the big ones. It turned out to be a fantastic game for all the ages. After the egg hunt we played outside for awhile. Then we opened presents. Emily got lots of fun things. Her big present was the Signing Time Videos Mommy & Daddy got her!! She went crazy! All the sudden she started signing "signing time" over & over & over again. I am so glad that she was so excited about them especially since they are educational & mostly for therapy & communication!! Next we did cake! Which Emily couldn't wait for...I had caught her earlier in the party sticking her finger in it (over the back of the counter). We have been working really hard for the last couple weeks on blowing which is not one of her strong suits. She did great! She didn't need any help blowing out the candles this year!! After cake we decided to go back outside & play a few games. So the Dads were in charge of the games & they played Duck, Duck, Goose which Matt still insists its Duck, Duck, Grey Duck...even though no one else knows what he's talking about! I think they also swung on the swings, played kickball & tag. It was fun. We had so much fun! I really love having parties at our house. Our friends can stay as long as they want to & we aren't in anyones way!! I think that sums up Emily's Birthday.
Easter this year was definitely a challenge! Poor Cameron kind of lost out on that first Easter. We got up & did baskets (the Easter bunny was lazy this year & didn't hide them). Anyhow, then we started getting ready for Church. About 20 minutes before we were going to leave Alex gets sick. Not just once but 3 times. So we decide that my Mom will stay home with him so we can take the other kids to Church still. Church was wonderful! Packed but it was a good sermon & Emily, Hunter & Cameron were well behaved! We pile in the car & head home. When we are pulling into the drive way Hunter says "Sorry, Mommy & Daddy I was sick". We are thinking he just feels sick but no he got sick at some point all over the back seat! Poor Baby! So I get all the kids in side, Hunter cleaned up & Alex is still getting sick (now every 10-15 minutes). My Mom says "I started getting sick 20 minutes after you left for Church"! Fantastic!! At this point I think everyone has the plague. So all the kids are in PJ's now everyone has a bucket & we are watching a movie (don't ask what because I have no idea...I spent to much time following kids to the bathroom). Matt was great & cleaned out the car while I was getting the kids in PJ's. Just in case anyone doesn't know this about me...I can handle most anything in & out of the human body BUT the sound of someone getting sick makes me ill! Matt knows this & sends me upstairs to nurse Cameron & take a nap or do what ever. Well, a friend calls while I am nursing Cameron...her daughter Gabbie (who was at the Birthday Party) was getting sick. Awhile later Matt starts getting sick! Then Gabbie's Dad starts getting sick too. Next was my turn & well we get the idea. I think after all was said 10 people from Emily's Party were extremely sick starting sometime on Sunday & lasting thru Tuesday. After talking with everyone we figured out that 10 of the 12 people who ate the sandwiches got sick. It was the only thing that all of us who got sick ate in common & the ones who didn't get sick...dint have sandwiches (go figure)! Matt talk to the grocery store & got a refund from them. They took the extras to have it tested. So unfortunately our Easter Sunday & the last 2 days of my Mom's trip were spent super sick. At least we are all feeling better now! I am very glad that Emily & Cameron didn't get sick (that would have been even harder).
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