~Emily's Apraxia~

Silly Little Update

2010-02-24T22:15:00.003-07:00

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!

The craziness of January!

2010-01-29T17:32:00.003-07:00

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.

2010-01-10T22:45:00.003-07:00

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!

Catching Up!

2009-08-14T21:30:00.003-07:00

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!

New Article on Apraxia Reaserch

2009-07-12T08:32:00.014-07:00

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

GI Update

2009-07-10T22:11:00.003-07:00

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

2009-07-10T22:06:00.004-07:00

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!

4th of July!

2009-07-04T22:05:00.004-07:00

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!

Zoo Trip!

2009-07-03T18:16:00.007-07:00

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...

Before & After Ear Tubes

2009-06-27T21:21:00.003-07:00

hanging out in car before check-in

taking silly pictures of each other

otter pops are really good

crashed out

Forever & Ever

2009-06-27T20:35:00.005-07:00

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.

Tomorrow is the BIG day

2009-06-09T20:53:00.006-07:00

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!

Long time...

2009-06-04T20:37:00.004-07:00

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!

Pediatric GI

2009-05-18T16:41:00.011-07:00

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.

Pages

2009-05-15T06:33:00.005-07:00

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!

2009-05-15T06:08:00.002-07:00

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.

2009-05-10T00:39:00.003-07:00

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

2009-05-09T23:03:00.012-07:00

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.

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!

Emily's 3rd Birthday!

2009-04-22T00:23:00.002-07:00

2009-04-20T23:24:00.009-07:00

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).

2009-04-06T22:31:00.005-07:00

3 Years Old!

Emily will be turning 3 this year on Easter Sunday! It never occurred to me that any of my kids Birthdays would ever fall on a Holiday. Well here we are...Easter! Totally not a fan!! I am in the process of planning a Birthday Party for Emily (this Saturday), Easter for all the kids & a small Birthday Celebration on Sunday!!! We have always had a Party for the kids & then done something special on their Birthdays (usually cupcakes & a present or two). I wont slack just because its Easter but it definitely isn't convenient!! Okay thats enough of that...

Emily decided on her own that she wanted a Minnie Mouse Birthday!! I love it! I was almost willing to bet she was going to choose Princess but no Minnie! We got her these cute little Minnie ears. Oh, how cute she is. I think we are going to incorporate Easter a little into the party & have a Egg Hunt! I think that would be fun. Oooo...I should go to Target & get Dark Pink & White Jelly Belly's. Huh. Now I think I am going crazy (do you really think a bunch of 6 & under kiddos are going to notice that the jelly beans match?)! Anyways it will be fun. On the Disney website there are some great ideas for games & printable things for the kids to do. Most of you that know me well know that I always make my kids their Birthday cakes. Well apperently Minnie Mouse isn't too popular anymore. I cant find a cake pan to save my life. Or well I can if I want to spend $45-80 which seriously that cake better make its self for that price. Now, I would totally buy it if it frosted itself that would be a cool trick! So after a very frusterating search I have decided to make Emily a teir cake. 3 small teirs. The bottom will be bright pink with white polka-dots (which is Minnie dress color), the middle layer will have strips or swirls (something similar) & the top will have little Minnie heads (with just a bow). I ahouldnt be too dificult (I hope). I have to use foundant which I have used before but not in a long time & certainly not here in HOT land! I am sure it will be fine...if not there is a Fry's right down the street!

She has truely grown a ton in the last year. I look back at her pictures from last year & wonder where has the time gone! Where did my baby go. Before I know it she will be off on her own. Wow.

Emily Birthday 2009 (and Easter)

Emily Birthday 2008

2009-04-02T19:51:00.006-07:00

The Wheels on the Bus...

First time on a school bus!

Home from school!

Today was Emily's first bus ride. She was very excited unlike Mommy who was very nervous! She wanted to wait outside for the bus. It was scheduled for 11 am but I was told it would probably be later. So we got out the sidewalk chalk & drew pictures of Emily, Mommy & different shapes while we waited. As most of you know it is already getting very hot here. Well Mommy is a wimp & wanted to go inside but just then the bus showed up! Emily grabbed her backpack & off she went right up to the bus. It was all fine until the brakes let out air... Emily jumped so high! She grabbed my leg & wouldn't let go. The bus driver said that I could bring her on the bus & strap her in. I pick her up & took her to her seat (which was the 3rd row). I buckled her in to the car seat. I said I love & will see you after school. She gave me this look like excuse me your, not staying! She didn't cry though! My tough little girl. I got one really fast picture & got off the bus. Wow, I never realized how hard it was going to be to put her on the bus (emotionally). I mean I knew that it would be tough but it was very difficult letting go of that control. I placed so much trust in someone I didn't know. Well I made it through the day & so did Emily. She fell asleep on the bus ride home (not a surprise). The bus driver (who is different in the afternoon) asked if she had ever rode the bus before & told me that Emily did wonderfully! I am so proud of my baby girl! I was able to get a quick picture of Emily in front of the bus before it left.

Emily brought home some crafts that she worked on at school. They have been working on the letter H this week & the sounds it makes. They are also talking about Spring Time. Emily made a very cute chicken & the letter H. She was very proud of her creations.

We have a communication log with Emily's teacher so we know what she is doing on everyday. Partially because she rides the bus & we never see the teacher. Mostly because Emily is unable to tell us what she has done. I know today Emily made a bunny. I can't wait to see it!

Emily's cute little chicken!

The letter H (like you can't see that!) :)

Very proud of her work!!

2009-03-30T23:17:00.003-07:00

Emily's First Day of Pre-School

Today was Emily's first day of school! She was so cute as she walked out of the house this morning on her way to the car. She had her new Princess backpack & was pulling it with such pride. We asked her to stand in front of the house (of course the sun was right in her eyes) for a couple pictures for her first day of school. As usual she is a cheese!

When we got to school she grabbed her backpack & decided she wanted to wear it on her back! She was so cute & her backpack is just about as big as she is! I am surprised she didn't fall over backwards. As we walked through the school gates we meet with one of the classroom assistants She showed us around Emily's classroom & told us a little about their daily schedule. The boys thought it was really cool to see where Emily was going to school. We found out that Mondays she will have music therapy & speech therapy. The classroom assistant showed Emily where to place her backpack. Then she took her outside to meet some of her classmates. There are 3 new students (total) beginning today in Emily's class. She was a little shy at first but the assistant asked if she wanted to play in the sandbox & off they went! It was great! No crying, clinging or hiding! She went & played in the sandbox with some of the other kids & we were able to watch her interact. She did great. We made our escape & went to lunch (before Matt had to be back to work).

I went to pick her up after school by myself (well the other 3 in tow). She was happy to see us, grabbed her backpack & out the door. The teacher Ms. Abbott said she did wonderful! She cried just for a moment during music time (which I think might have to do with her hearing because she always does that when a group sings). Other then that she did great!! We will see how tomorrow goes!

We still don't have transportation set up! Seriously I cant believe how slow the District Office is. I have called 3 days & left messages. I am not sure how it is going to work since the boys go back to school tomorrow! I am either going to have to get the boys 10 minutes early or be 10 minutes late to get Emily. Thus the reason for transportation. I think tomorrow I will have to get a little aggressive & try to talk to a management type person. If I do I bet I will have services on Thursday.

2009-03-29T22:26:00.012-07:00

~The Big Day~

Tomorrow is the big day! My baby girl starts pre-school. We talked to her a little today about it. I don't think that she really understands that what school is. I am excited, Matt will be taking a long lunch & meeting us at school so he can be there for her first day. It is still so hard for me to believe. She is so tiny still & just doesn't seem old enough. But its going to be great for her to start learning & making progress! I am also excited to have a little one on one time with Cameron (which I was able to have with Emily at this age). We will update everyone tomorrow after school!

2009-03-25T23:39:00.002-07:00

Pre-School

Emily starts school in 5 day!! Wow, I realize that I am not ready. She is my baby girl & I am not sure how I will make it through the day without her. I know its only 3 hours 4 days a week. But when you are used to having your kids with you all the time its like a piece of you is missing when they go to school. I know that its a great opportunity for her & that she will learn so much. I know that she needs it really bad etc... But right now I really want to be selfish & not want her to go!! I think after spending the last 3 years (pretty much constantly) with her I deserve to have this moment! Okay, I feel a better now. Am I allowed to miss her now even though she hasn't started? Oh man, where does the time go?

We got her (okay Daddy folded...hehehe) a Disney Princess backpack with wheels! It didn't come real cheap but that's due more to the wheels the the Disney Princess theme. She has to have a backpack to fit her take home folder & notebook. So that means a regular sized backpack which on Emily, well pretty much is the same size as her. It was so funny in the backpack aisle at Target. She almost fell over (nothing in it) so Daddy decided to get the wheels. Good choice Daddy! She loves it!!

Did I also mention that Emily will have to ride the bus to school! This is the hardest thing for me. I think because I am so particular (thats the nice way of saying it) about car seats. She will be in a car seat on the bus & yes it does have seat belts. Its just that I wont be there! I wont let Matt install the car seats in our car because if they aren't right a child could get seriously hurt in a fender bender! The only reason why we are getting it is because of a scheduling conflict between Emily's pre-school & the boy's school. The boys are out at 2:40 & Emily is out at 2:55. I don't physically have enough time to get from the one school to the other. Not unless I get a turbo boost on the minivan! JK! Next year (if the boys are still at Eduprize) I am going to try & get Emily in morning pre-school (then I don't think there is a time conflict). If we Home school there wont be a problem at all with me driving her there.

One last crazy rant... who in their right mind decides to do "projects" (such as cleaning out closets, entertainment centers, cupboards, spring cleaning things...) while all of their kids are at home board on Spring Break? Some on who is CRAZY that's who. I do really think that my mind is lost. So this is your notice that if you find it please return it! I have come to my senses & I am just trying to survive the last few days of spring break & I can do clean up when the kids are back in school! But mean while my house looks like a cross between tornado Emily & WWIII (Alex & Hunter). Plus my dish washer is gone (he's in Colorado). I am so used to our deal that the cook doesn't clean that I am not sure I remember what the dishwasher looks like. Okay, now I am done.

Have a Fantastic Day!

2009-03-25T22:08:00.003-07:00

Hearing

Emily had her hearing tested again yesterday with our AzIEP Coordinator. Its been about 9 months & on her first test with them she passed one ear & we couldn't get a reading on the other ear. This time she got referrals on both ears. Which essentially means she failed the pre-screening test. There are many reasons why she failed them. Either she is about to get or recently had a ear infection (that would be the easiest & least life altering). My guess is due to the amount of ear infections she has had & her speech issues she probably has fluid in her ears. That would more then likely mean she would need tubes put in. The other reason could be some level of hearing loss in one or both ears. This wouldn't completely shock me (I have a immediate family member who is sever-profoundly deaf). We will be taking Emily to a ENT (ears, nose & throat) doctor as soon as Matt's insurance kicks in (so the end of April). We are going to request that they do a ABR test. This test is done while the child is asleep (or sedated for toddlers & older children). It is the best & most accurate test. Plus we do not feel that Emily will do well with the regular hearing tests due to her Apraxia.

I always knew that ears are complicated, I just never really looked at one so closely! I am amazed that there aren't more people out there that have hearing issues. I recently had a ear infection that lasted just over a month. During that infection I lost partial hearing in my left ear. Boy was it horrible. Going from being able to hear to asking for everyone to repeat themselves over & over again. It is amazing how one little thing works. Wow, are ears amazing.

Auditory brainstem response (ABR) test

An infant is sleeping or sedated for the ABR. An infant may be sleeping naturally or may have to be sedated for this test. Additionally, older, cooperative kids may be tested in a silent environment while they're visually occupied. Tiny earphones are placed in the ear canals. Usually, click-type sounds are introduced through the earphones, and electrodes measure the hearing nerve's response to the sounds. A computer averages these responses and displays waveforms. Because there are characteristic waveforms for normal hearing in portions of the speech range, a normal ABR can predict fairly well that a baby's hearing is normal in that part of the range. An abnormal ABR may be due to hearing loss, but it may also be due to some medical problems or measurement difficulties.

-http://kidshealth.org

2009-03-24T23:44:00.003-07:00

Oral-Motor Exercises Today!

Here are all of the oral-motor exercises we did today. They are fun & exciting for my Miss Pretty! We are supposed to spend 10-20 minutes 2-3 times a day. Today we had 2 sessions. The first was just Emily & Mommy. We spent probably 15 minutes making faces & playing our new whistles & silly noise makers. She carried the slide whistle around for half the morning blowing on it! Our 2nd session was this afternoon. Alex & Hunter joined us as well. The pictures below are from our afternoon session. We probably spent a good 40 minutes "playing" at the table. We all had so much fun.

Lizard

Emily loves to watch Signing Time while eating breakfast. She asks every day! I think we are watching "Leah's Farm". It has a ton of animal signs & a silly song about turtle rock. I have found that music is another way that Emily is able to connect with speech! When it is a song on a movie or TV show she really pays attention. She tries to say some of the words in the song. If she is unable to say any of the words she at least picks up on the sound & tone fluctuations.

Peanut Butter Therapy

We have been working hard everyday (usually 2 or 3 times a day) on our oral-motor exercises. This is definitely one of our favorites! Spread peanut butter all over your lips & can only get it off by licking your lips with your tongue. No cheating by using your hands or teeth (or even rubbing your lips together)! The boys also had a blast doing this with her. She is also holding a silly straw (crazy shapes). We use those to blow tissue across the table at each other. The more bends & twists the straw has the hard you have to blow. Emily doesn't like this exercise as much but will do it when the boys join us.

Apple Sauce Sucking

Yum! We love to drink anything thick through a straw. Oral-motor exercises are a kids dream come true. They get to play with their food essentially! Drinking apple sauces, milk shakes, yogurt & pudding through straws. We get to pick up Cheerios's off the table with our tongues. We get to eat hard chewy candy & gum. I am hoping never to hear a complaint about oral-motor therapy ever!

Silly Faces

At 3 making silly faces is what life is all about! We get to do for therapy!! Silly faces is probably our favorite oral-motor exercise so far. Why... because we can do it anywhere we go. Everyone is laughing & having fun. Who doesn't love to stick out your tongue & try to touch your nose or chin?! Who doesn't like to wiggle your tongue from side to side & top to bottom?! I tell you, if Emily knows anything it is how to be super silly!

2009-03-22T22:36:00.002-07:00

Things at Home

We have officially started our at home oral-motor therapy. Amber (Emily's ST) gave us a great list of OM ST to work on with Emily. So far its been fun. We have been pick the really fun things to do like drinking milk shakes out of straw & eating hardened chewy candy. She has no idea that we are working on strengthening her little tongue, lips & jaw.

We are also working on other communications things... I am continuously increasing signing & we are going to start working on PECs (picture communication exchange communication systems). Its a system of pictures that Emily can choose & point to want she needs or wants. Since Apraxia is a motor planning disorder she has a hard time coming up with signs spontaneously (just like words). She will run through her list of signs (in a specific order) trying to figure out which one she wants to use. With the PECs she doesn't need to spontaneously come up with anything. She looks at the pictures & points to the one that represents what she is trying to say. We will then reinforce the sign & the verbal word.

I have also been working on the alphabet in sign & verbal. I find that Emily responds well to music. She may not be able to say the words but she is able to fluctuate her voice to match the pitch & rhythm of the song. We are working on writing... such as drawing straight lines & circles. We are trying to work on patterns but mostly with that we are working on repetition (for speech).

She is a amazing little girl! Everyday I learn something new from her.

2009-03-15T01:04:00.002-07:00

Patience & Understanding!

Emily is very eager to learn anything & everything. Her comprehension is at or above age level. She does act younger but only because it is so difficult to live without communication!

Just for a moment try to imagine being able to comprehend everything someone is saying or asking. Now imaging you are unable to talk. How would you communicate what you need or want to that person? You would probably write it down, draw pictures or point. These are all things that you have learned as you grow. Well Emily hasn't learned how to write or draw yet. She is in the very, very early stages of learning to point (and/or sign). So now put yourself in her shoes. How would you communicate without writing or drawing. Its very hard to do. That is just a example of one of the problems Emily deals with due to Apraxia on a day to day basis.

I am learning to be more patient & understanding!

2009-03-14T21:52:00.007-07:00

IEP Meeting!

After a long 2 hour meeting I signed the paperwork. I didn't want to but signed it anyways. Matt asked me to.

Emily's goals are to consistently use verbal, signing or PEC's (picture boards) communication 75% of the time during circle time, snack time & table time. She will be receiving at least 90 minutes of ST a month. Which will be in the classroom so that the Speech Therapist is able to work with her on the things she is doing in class. It essentially breaks down to approximately 23 minutes a week. So once we combine that with in home speech therapy, she will be getting at least 1 1/2 hours a week. Which at this age I am okay with.

Emily gets a little overwhelmed when our therapy sessions are long. We have decided to break them into 30 minute sessions (at home). We are also partnering with our home Speech Therapist to create a "at home therapy" program that Matt & I will be doing with her 2-3x a day. Most of it will consist of Oral-Motor Therapy. There is information on Oral-Motor Speech Therapy below. We are also continuing to learn & teach signs everyday (we love signing time)! We are going to begin to use PEC's at home just until we either learn the sign for it or learn how to verbally say it (mostly so she knows how to use it when she goes to school). Unfortunately we will be losing at home speech therapy for about a month & a half. This is due to Matt's new insurance not beginning until the end of April. We do currently have insurance but it isn't very good, especially for this sort of stuff. Once we have our new insurance we have to pay for the deductable first! Yikes!

What is Oral-Motor Speech Therapy?

Therapy designed for patients with muscle-based speech disorders related to poor muscle strength and difficulty with motor planning/coordination for speech movements. This approach uses therapy tools to systematically improve oral muscle movements.

Why use Oral-Motor Speech Therapy?

Normal muscle movement must exist for standard speech clarity to develop. Patients with muscle-based disorders do not have the muscle strength or endurance to support the development of intelligible speech (Rosenfeld-Johnson).

Many individuals who may benefit from an Oral-Motor Program are able to speak in short phrases or even in complete sentences, but they are very difficult to understand. If the muscle weakness is not addressed, these patients will continue to exhibit speech problems, specifically in connected speech (Rosenfeld-Johnson).

How Does Oral-Motor Speech Therapy Work?

Oral-Motor Speech Therapy uses a muscle-strengthening program in conjunction with traditional speech remediation techniques to:

. increase oral awareness
. develop correct placement for sound production
. increase strength within the oral musculature
. improve motor planning for speech movements
. improve speech clarity

Who Can Benefit?

Patients who experience excessive drooling, tongue thrust (tongue sticks out when talking), open mouth posture, weak breath support, speech that is difficult to understand, weak oral muscles (lips, tongue, jaw), lisping, poor oral awareness, or feeding problems can potentially benefit from an Oral Motor Program.

2009-03-08T19:48:00.002-07:00

It has been a crazy weekend but not much new going on here.

This week is the big one! Emily has her IEP meeting on Wednesday. This will determine how much therapy (and what kind) she will be receiving in preschool! I have been doing tons of research & I am hoping to get Matt up to speed on all of it before the meeting (Wednesday) so we can go in on the same page. Even though our Speech Therapy has been cut (thru Early Intervention) I asked our ST to attend the IEP meeting with us to give her thoughts on what Emily's needs are. I hope that she will be able to help us get as much speech therapy as we can. She has also written up Emily's Assessment which I plan to bring with us.

Please pray that we are ale to get the services that Emily needs.

2009-03-08T19:45:00.002-07:00

SPEECH AND LANGUAGE ASSESSMENT

Name:
Emily
Date of Assessment:
2/27/09
Date of Birth:
4/12/06
Date of Report:
3/2/09
Age:
2 years 11 months
Diagnosis:
Expressive Language Disorder, Apraxia of Speech
Adjusted Age:
N/A

Reason for referral:
Emily has difficulties communicating with others effectively due to severe expressive language delay and articulation errors. After working with Emily since October 2008, evidence has indicated that apraxia may be hindering Emily’s progress in her intelligibility. The purpose of this assessment was to determine Emily’s current oral motor skills, and make recommendations as deemed necessary.

Sources of information:
File review, parent interview, therapist data, apraxia checklist.

Findings:
The apraxia checklist requires Emily to participate in a variety of motor tasks.

Gross Motor Coordination:
In this task, Emily was asked to clap while simultaneously counting to ten, marching, sitting then standing, running in place and jumping jacks. Even with maximum prompts, encouragement and models, Emily was unable or refused all tasks. She obtained a score of 0%.

Oral-Motor Coordination:
A variety of lip movements such as pucker/retracting lips, slow and fast kisses, hiding the top and then the bottom lip, slow/fast lip pops, and pressing the lips together were modeled for Emily. Although she did attempt these tasks, Emily was unable to perform any of these. Her pucker is open and her pressing of lips is weak an slightly open as well. Tongue movements such as sticking the tongue in and out 5 times, licking the top and then the bottom lip, slow and fast clicks, moving the tongue from corner to corner, and circling the lips clockwise and then counterclockwise with her tongue were all modeled for her. Of these tasks, Emily was only able to move her tongue from corner to corner. When circling her lips with her tongue, she is able to move her tongue along the bottom lip, however is unable to elevate her tongue and circle. When asked to touch her chin with her tongue, Emily is successful, however is unable to raise her tongue in attempts to touch her nose. Emily obtained a score of 10% on her oral-motor coordination tasks.

Sounds in Isolation:
In this task, Emily is asked to repeat each of the letters as well as the /sh/, /ch/ and /th/ sounds. Emily was only able to imitate the /sh/ sound successfully, obtaining a 3%.

C-V-C Words:
C-V-C words are given as verbal models and asked to be repeated. Emily did make attempts, however was unsuccessful in correct production. The results are as follows:
Bib - /buh/ Roar – (roared like a lion)
Pop - /puh/ Hot - /ah/
Mom - /bom/ Shush - /sh/
Wow - /buh/ Zoos - /zu/
Tight - /n/ Sis - /di/
Dad - /da/ Move - /mu/
Kick - /I/ Van - /va/
Gag – No response Fife - /mai/

Emily obtained a score of 0% on her C-V-C Words.

Multisyllabic Words:
Emily was instructed to repeat the following words: Hot dog, dinosaur, watermelon, hippopotamus, kindergarten teacher. Emily did attempt hot dog with /ah duh/, however was unable to imitate any of the other words. Her score on this task was 0%.

Repeating of sentences, expressions and words of increasing length were not attempted due to Emily’s lack of success at the other tasks.

Results of this assessment support a diagnosis of apraxia.

Summary and Recommendations:
It is felt at this time that Emily has shown minimal progress with her production of initial sounds, and she is not yet putting these sounds into whole words. Her speech production is inconsistent and her words are often times produced differently each time she says them. Emily is often seen groping in attempt to find the appropriate lip and tongue placement for sound production, even when in isolation. She will use signs with prompts, although tends to prefer to use word approximations as her mode of communication. She refuses to participate in oral-motor activities other than blowing bubbles; however her mother has been given some snack ideas with oral-motor activities attached. Emily’s success in blowing bubbles is inconsistent with her lip rounding and breath support.

Emily is a child that likes very much to be in control of her situation, and when a situation is presented in which a task is difficult for her, she will run from the room and use other avoidance tactics in order to regain control. She is a very bright girl and is able to follow directions, size concepts, spatial concepts (i.e. behind, in front of, next to, etc), and a variety of objects. Her receptive language skills are her strength at this time. Emily needs maximum prompting to increase her expressive language skills, thus becoming a better communicator. In addition, she requires extensive oral-motor therapy to increase her sound production and motor planning success. The focus of therapy for a child with apraxia, like Emily, should be on improving the planning, sequencing, and coordination of muscle movements for speech. In addition, it would be beneficial to have an occupational and physical therapist conduct a screening of Emily’s fine and gross motor skills.
Practice and repetition is key to Emily’s success. Often times, getting feedback from a number of senses, such as tactile "touch" cues and visual cues (e.g., watching herself in the mirror) as well as auditory feedback, is often helpful. With this multi-sensory approach, she will be better able to repeat syllables, words, sentences and longer utterances to improve muscle coordination and sequencing needed for speech.

2009-03-04T09:44:00.003-07:00

Signing Time!

Emily signing "Signing Time"

Research shows that signing with children lessens frustration, opens the communication channels earlier, increases IQ's levels & can help them to talk earlier (for children under one).

Signing Time are DVD's created to teach ASL to all children. They used to be a PBS show but no longer are due to costs of production. We checked out 8 Signing Time videos (4 don't work) a week ago from the library. Emily has probably added at least 10-15 new signs to her vocabulary in just the last week! She now asks (by signing Signing Time) to watch them over & over again!

Believe it or not Emily is not the only one who loves to watch them... Alex & Hunter do as well!! They sing, they dance & they sign as well! The best part is they are learning to communicate with Emily. She thinks it funny when the boys use sign to talk to her... its very cute!

We love the Signing Time DVD's. They are the best tool for teaching children sign that I have found so far. I am so happy to have discovered them.

Our library's collection of Signing Time is limited. They have about 10 videos total. Signing Time has 2 different series with 13 DVD's in each series plus a baby series that has I think 4 DVD's in it. I think we are going to start our own collection at home since I plan on using it with Cameron as well & Emily.

Check them out at... http://www.signingtime.com/

Emily signing "Horse"

2009-02-28T07:37:00.009-07:00

Funding Cuts!

The State of Arizona has cut AzEIP funding. Emily will now only receive 1 hour of speech therapy a month!! This is the letter my speech therapist sent us. We have not been contacted by our support coordinator yet.

February 26, 2009

Dear Sub-Contracted Therapy Provider,

As you are aware, the Arizona Early Intervention Program has been significantly impacted by the budget cuts intended to offset the state’s deficit. Easter Seals Blake Foundation was given a new, significantly decreased, budget to work with while at the same time continuing to support the same number of children within the program. In order to continue to support all of our families, we have had to look at making reductions in all aspects of our program and agency, as well as do our best to align our program and current systems with available resources.

In order to ensure that all families funded under the AzEIP only contract continue to receive support from the expertise of our team members within this new budget, we have had to institute the following changes to our on-going therapy frequencies:

Each family will receive one monthly home visit per service identified on their child’s Individualized Family Service Plan (IFSP).
Each monthly visit should be approximately one hour and cannot exceed two hours in length.

The above changes are effective as of March 1st, 2009 and will be continued through June 30th. Therapy frequencies will be revisited once our agency receives additional financial information in the new fiscal year. If the team decides that the family and child would benefit from more frequent therapy visits, then we encourage the team to go through the child’s health plan. AzEIP is currently working to develop a basic overview for billing AHCCCS and a protocol for accessing EPSDT services through AHCCCS. Once we receive this procedure, it will be forwarded to you immediately. Our service coordinators will begin to contact families today in order to discuss these changes.

There currently are no changes to the Initial Planning Process and our Developmental Specialists will continue to refer children to you for an evaluation to assist in eligibility determination.

Much consideration and planning has gone into making these very difficult decisions in order to minimize the impact that these devastating cuts will have on the families we support, our staff, and our subcontractors. We understand how these changes may affect you and will do our best to support you during this time. Your commitment to each other, to the program, and to the children and families that we serve is appreciated. Please know that our commitment to you is just as strong.

Our management team will continue to evaluate our current systems and resources in order to prepare financially for the next fiscal year and would appreciate any input from you. Please be reminded that the above listed changes only pertain to AzEIP only funded children (not DDD children). If you have any questions, please do not hesitate to contact me at (000) 000-0000 x 0000 or any of our early intervention supervisors.

Sincerely,

M W

Matt & I are going to do what ever it takes to make sure Emily gets at least weekly speech therapy. It cost $85 a session! Right now Emily is getting 4 sessions a month but she really needs to be getting 3 sessions a week (12 sessions a month). As of right now our insurance wont cover speech therapy. Once we have Lowe's insurance we will have 5 sessions a month (hopefully...thats the max they offer). So right now I am looking at what we can cut from our budget right now so she can have what she needs! As of right now she will still be starting school on March 30th. I am so thankful that she is going to be 3! I feel for the families with children who are younger & in need of these services! I don't think our government has thought about what the effects of cut these services will be! Unfortunately it is usually the children & people in need that get cuts first!

Alicia

2009-02-25T10:48:00.002-07:00

Fish Oil

We have decided to start Emily on fish oil supplements. In my research I noticed that many families give fish oil supplements to their Apraxic child. There has been no official research done to prove that it helps but most parents notice a significant difference in their child's speech. It helps with the neurological connections in the brain (Apraxia is a neurological disorder).

Emily loves them! She is taking a gel cap that is flavored lemon but instead of swallowing it whole she chews it! She says "mmm" so I think she likes it. I am also taking them with her but not brave enough to chew. Yuck. I have been wondering if the center is flavored lemon or just the liquid inside. Well a couple days ago I was running late to get the boys to school so I grabbed Emily's pill & gave it to her in the car. I think she put her hands in her mouth & then in her hair because she smelled like fish all day long! Eewww! It wasn't very pleasant. I washed her hair 3 times that night to get the smell out! I will definitely not be chewing mine!

2009-02-20T23:22:00.001-07:00

What Kind of Help Will My Child Need?

Children with CAS will need to begin speech therapy with a speech-language pathologist (SLP). Exactly how often the child should have speech therapy will vary according to the individual needs of each child. Children with CAS who have severely unclear or little speech and are more severely affected will require more therapy than those who have milder apraxia. Typically, experienced SLP’s will suggest that a child with moderate to severe apraxia of speech have 3 – 5 times a week of individual speech therapy. Other considerations may have to do with the extent to which the child will practice at home with their parents or caregivers; how much the child can individually tolerate; how frequently the parents can bring their child to speech therapy, etc.

As a child begins to make progress in their ability to produce speech that is understood by others, the amount and frequency of therapy can be adjusted accordingly. Another consideration will be the extent to which other speech and language issues are present in addition to the apraxia of speech.

Speech therapy for a child in which motor planning and programming (CAS) is felt to be the major contributor to the speech problem will involve a number of “key” principles. This is not to suggest that there is one method that is effective. There are a number of features of speech therapy that appear to be most successful to children with apraxia of speech. These features include:

principles of “motor learning” such as a high degree of practice and repetition, correction and feedback, slowed rate, and a focus on targeted motor placement and productions

Increased sensory input for control of the movement sequences and sensory cueing such as visual, tactile, and kinesthetic cueing; touch cueing; verbal cueing.

use of rhythm and melody

focus on speech sequences versus individual sounds

Many experienced speech-language pathologists use multiple methods and approaches rather than a "one approach fits all" notion, taking many of the methods mentioned above and using them based on the individual child's needs. There is no one "program" that is right for every child with apraxia of speech. Commercial products, programs, or kits can be tools for use in therapy by a SLP who understands the nature of apraxia and how to treat it. However, such programs alone are not the solution.

Children with apraxia of speech reportedly do not progress well in their actual speech production with therapy tailored for other articulation problems or with language stimulation approaches. Additionally, in young children the motor/sensory techniques and repetitions of words and target phrases should be woven into play activities that are highly motivational to them. What experienced therapists and families report is that children with apraxia need frequent one-on-one therapy and lots of repetition of sounds, sound sequences, and movement patterns in order to incorporate them and make them automatic.

In addition, many therapists recommend the use of sign language, picture books, and other means to augment speech in the child who is not clearly understood. This approach may be called "total communication." Having the child pair a vocal word attempt with a sign enhances the chance that the listener will be able to "catch" the communication (if the spoken word isn't understood, perhaps the sign will be). Having others understand the communication can offer the child motivation and the feeling of success in using their voice to communicate.

Many children with apraxia of speech, even at young ages, have some awareness of their difficulty. Providing successful communication experiences only encourages the child. Also, for children with apraxia of speech, signs can become important visual cues to help them know how to place their mouths, etc. in order to produce the desired word. When pairing of spoken word and sign is consistent, the child may come to associate the visual image of the sign with the placement of their articulators. In a few children, sign may not be appropriate. For example, for some children signing might be too distracting or their ability to consistently form a sign may be impaired.

Finally, it is important for parents and others to understand that many children will have other needs, above and beyond the speech practice mentioned above. Many children will also need to work on using language, such as how to put sentences together appropriately; use verb tenses; word endings, and so forth. Some children may have some degree of difficulty understanding language and that will need addressed in speech therapy in addition to the speech production practice that is needed for the apraxia part of their difficulty. Some children will need to learn conversational skills like turn taking, staying on topic, giving eye contact, and other “pragmatic” skills. All of these areas would require their own approaches and are above and beyond what is needed to improve speech production.

Other Professionals

If you have concerns about your child’s development in addition to their speech, other professionals may be called on to get involved in helping your child. For example, a developmental pediatrician can evaluate all aspects of your child’s development. A Developmental Pediatrician is a pediatrician with advanced training in neurodevelopmental disorders and “atypical” child development. This type of professional can help recommend and coordinate services that the child may need. A Pediatric Neurologist may be helpful if there are overall neurological concerns in addition to speech. Other professionals that can evaluate and treat other aspects of a child’s function, include occupational therapists, physical therapists, and developmental specialists.

-Apraxia-KIDS at http://www.apraxia-kids.org/

2009-02-20T16:53:00.001-07:00

We are so blessed to have her in our lives! She brings light to my life every single day!

2009-02-20T16:31:00.000-07:00

~It Official~

Or it will be next Friday! Emily will be formally diagnosed with Apraxia. Wow! I just am not sure how I truly feel. I am happy that we are able to have EI (early intervention) & I am happy that our ST knows what Apraxia is, how to diagnose it, treat it, etc. Am I ready for this road? No! Do I want to be here? No, not really! Do I have a choice? Once again, No!

Here we go as a family moving ahead to make sure that Emily has the best treatments possible! I am thankful that we qualify for free preschool but I know that they can not offer enough help for my little girl. I am also thankful that I get 60 ST sessions in a calendar year (approximately 5 per month) through our insurance but that is not near enough. So I guess the big question for me is, how do we make sure she has everything she needs (at school & home)? I guess we hope that the school understands the severity of her condition & get her everything she needs for home. Then we hope & pray that everything else falls into place!

2009-02-19T12:45:00.001-07:00

Middle or Last Child?

Where does Miss Emily fit? Both! I think she fits strongly into both categories! I have marked Emily's traits with the *.

Middle

*Flexible

*Easy-going

*Social

*Peacemaker

*Independent

*Secretive

May feel life is unfair

*Strong negotiator

*Generous

Last

*Risk-taker

*Outgoing

*Creative

Self-centered

Financially irresponsible

*Competitive

*Bored easily

*Likes to be pampered

*Sense of humor

Along with all these traits Emily is also... Demanding, Sensitive & extremely Loving!

2009-02-19T08:45:00.000-07:00

Transition Meeting

For those that don't know... the government covers ST for delayed children in the home from birth to 3 years old. Once the child turns 3 the local School District takes over by offering free preschool & therapies to children that qualify. Emily more than qualifies!

We had our first Transition Meeting! Unfortunately Matt was not able to make it but I am glad because it only lasted for 20 minutes (it would have been a waste for him to take off). There were 5 school representatives, Ms. Deann (our Early Intervention rep.) & myself in attendance. We went over Emily's medical history, her testing scores & her progress reports from Ms. Amber (ST). She was accepted into the program without any further testing. I told them that our current ST strongly feels that Emily has Apraxia & wanted more information on how that would be handled in the school setting. Their ST was out of town so they will be talking with her about it when she returns. They knew what Apraxia was & that it took lots of therapy to make progress. The school is 4 days a week for 3 hours a day. They would like her to begin once school resumes after spring break so her first day will be March 30th.

We have our IEP Meeting set up for March 11th. This will be the big meeting!! We will set up the goals we have for Emily & how they will be met. Including how much therapy she will receive!! I am hoping to get at least 30 minutes a day of one-on-one therapy with the SLP (speech language pathologist). That would be 2 hours of ST at school a week. Our insurance will cover approximately 5 ST sessions in a month so we could have a hour of ST in home. That would give Emily 3 hours of speech every week! I am not sure about the summer but I am hoping that the school will allow her to do a summer program. I have heard of so many children with Apraxia regressing during the summer months. If they don't offer her something we will have to pick up on the in home therapy during that month. Right now we are very thankful that we are able to get help from the government & the school district to help Emily! (therapy is extremely expensive)

She is a wonderful child that deserves to be heard! We are truly blessed to have her in our lives!

Alicia

2009-02-17T01:27:00.001-07:00

2009-02-16T21:18:00.001-07:00

~Bedtime~

I have never had issues with any of the kids going to bed. Until now!! Over the last 2 months Emily will not go to bed. She's up night after night fighting with us to stay in bed. All she wants to do is either play or hangout with us downstairs. We have tried to Super Nanny her (not talking to her & placing her right back in bed) but it becomes hour, after hour, after hour of screaming! It ends usually with exhausted parents & Emily still awake but now absolutely upset. We have tried taking away her daytime naps hoping that she will be exhausted by bedtime. Nope she is still awake! She will not go to bed without the cheap IKEA hanging light on (oh & the night light by the bed). Right now that is the only leverage that I have. "If you don't stay in bed, Mommy will turn out the lights". Usually it works but not always.

My only thoughts are that maybe along with Apraxia she has a very mild Sensory Disorder (SD). SD's very commonly accompany Apraxia. She does have other traits that are commonly associated with SD's such as hyperactivity (only at certain times not all the time), sensitivity to light, mouthing things, seeks out "daring" things (like jumping & bumping into items or people) just to name a few. some of them can go along with normal things kids do at her age group but all together can be a sign. There really aren't any treatments I would try for SD (if she does have one). I only hope that she learns how to live with it. Right now everything is so new & we are still in the process of learning exactly what is going on with her. So until we have a firm diagnosis this is all just speculation. For now we can only wait & see.

So I am up every night, just like tonight... put her back in bed for the 28th time. Telling her she needs to lay down & go to sleep or the lights are going to be turned off. Now back to bed for the 29th time tonight but this time without the lights!

Alicia

2009-02-13T22:55:00.001-07:00

Emily's Verbal Word List...

Ale (Alex)

Unte (Hunter)

am (Cameron)

Papa

dog

mil (milk)

ba (bottle/sippy)

wan (want)

i (it)

ov (love)

ou (you)

ank (thank)

eass (please)

pooh (as in winnie)

jui (juice)

wha (what)

do (doing)

one

wo (two)

ree (three)

iraf (giraffe)

bal (ball)

al (all)

don (done)

Multiple Word Combinations...

I wan it (I want it)

ove ou (I love you)

ank ou (thank you)

wha ou do (what are you doing)

al don (all done)

Emily's Signs...

milk

juice

eat

please

thank you

all done

apple

banana

orange

dog

cat

lion

tiger

bear

bird

pig

zebra

giraffe

cup

drink

monkey

turtle

elephant

hurt

change

alligator

fish

sheep

help

sleep/bedtime

baby

mouse

duck

snake

book

good

bad

brush teeth

chicken

train

red

yellow

2009-02-13T22:23:00.000-07:00

Hopes for this Blog

My hopes for this blog initially is to keep family & friends updated on what is going on with Emily & her development. As Emily develops I hope to educate others about Apraxia as well as share our experiences with other parents of Apraxic children.

We are just at the beginning & have a long road ahead of us. With the support of God, our family & our friends I know that we will make it through. Please take sometime & check out the links I have placed to the right of the blog. Especially Apraxia-KIDS & Apraxia Speaks. They are a wealth of information on Apraxia! Knowledge is life! Thanks.

Love,

Alicia & Matt

2009-02-13T22:11:00.001-07:00

What is Childhood Apraxia of Speech?

Childhood Apraxia of Speech is a motor speech disorder. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Apraxia of speech is sometimes called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia. No matter what name is used, the most important concept is the root word "praxis." Praxis means planned movement. To some degree or another, a child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements. Apraxia of speech is a specific speech disorder.

The act of speech begins with an intention to communicate. Next, an idea forms, outlining what the speaker wants to say. The words for the desired message are put in the correct order, using the correct grammar. Each of the words are comprised of a specific sequence of sounds (also called phonemes)and syllables that must be ordered together. All of this information is translated from an idea and information about order of sounds into a series of highly coordinated motor movements of the lips, tongue, jaw, and soft palate.

The brain must tell the muscles of these “articulators” the exact order and timing of movements so that the words in the message are properly articulated. Finally, the muscles must work properly with enough strength and muscle tone to perform the movements needed for speech.

In typically developing speech, children make word attempts and get feedback from others and from their own internal systems regarding how “well” the words they produced matched the ones that they wanted to produce. Children use this information the next time they attempt the words and essentially are able to “learn from experience.” Usually once syllables and words are spoken repeatedly, the speech motor act becomes automatic. Speech motor plans and programs are stored in the brain and can be accessed effortlessly when they are needed. Children with apraxia of speech have difficulty in this aspect of speech. It is believed that children with CAS may not be able to form or access speech motor plans and programs or that these plans and programs are faulty for some reason.

- Apraxia-KIDS at www.apraxia-kids.org

2009-02-13T21:16:00.001-07:00

A Little Background Information

A little background information on Emily. We had a great birth, no complications, it was quick & easy. We were out of the hospital in 24 hours. She latched & nursed like a pro! She was very mellow & laid back, hardly ever fussed unless she was hungry. At about 2 months the Doctors were concerned because she was "falling off" the curve on the charts. At 3 months our Pediatrician labeled Emily as FTT (failure to thrive). Essentially that meant she wasn't growing at the rate that a "normal" child would so she wasn't "thriving". So that is when we began a insane year long journey with many different Doctors & strings of tests. All ending up at the same place... she was normal just small! Matt & I finally decided after over a year to put a end to all the tests. She has been following her "own curve" for almost 2 years now. At our 2 year wellness visit I brought up concerns about Emily's speech or lack of speech. The Pediatrician was not too concerned & told us that she was probably a "late talker" so just wait & see, we could talk about it at her next appointment (2 1/2 years). After 3 months of waiting we decided to take her in again & push the Doctor to have a evaluation done. In August, Emily was evaluated by the state of Arizona & found to have a speech delay. She began Speech Therapy (ST) 2 times a month & Developmental Therapy (DT) 2 times a month (alternating weeks). In December the Speech Therapist mention Apraxia to Matt & I. She told us a little about it & asked us to look it up & tell us if we thought it sounded like Emily's speech issues. After a ton of research I found that Emily fit very well into the signs of having Apraxia. We have not had a formal diagnosis of Apraxia yet. But are planning on having that done real soon. We have upped her ST to every week with DT still ever other week. We are also in the process of transitioning her to a preschool. The State no longer provides therapy at the age of 3 but the School District is required to. We hope to continue working with the SLP (speech therapist) Ms. Amber, after Emily starts school. Emily really likes her & seems to respond to her techniques. Hopefully we can afford it.

I am amazed that my little baby girl is going to turn 3 years old in 2 more months! Wow, how time gets away from you when you aren't looking!

Alicia