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!

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

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!

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!

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...

Before & After Ear Tubes

hanging out in car before check-in














taking silly pictures of each other


















otter pops are really good














crashed out

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.

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!

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!

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.

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.

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

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.

A       

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!

Emily's 3rd Birthday!

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). 

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 

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!!

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.

~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!

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!

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

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!

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.  

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!