Wednesday, February 24, 2010

Silly Little Update

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 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!

Friday, January 29, 2010

The craziness of January!

Wow! Where to even begin. Emily's beloved ST isn't covered under our new insurance. Matt's company decided to switch providers from BCBS to Aetna. Well apparently Aetna feels there are enough in home speech therapists in our general area, so they won't pick up Amber's office. Really, if it's not one thing it's another! So we are now forced to either pay out-of-network costs, privately or find a whole new provider! I really have no other choice but to find another 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.

Sunday, January 10, 2010

WOW! August, has it really been that long since I have updated here!

Emily is doing fantastic! She is such a intelligent little girl. I know that's what I am supposed to say because I am her mom but seriously she is a smart little girl. She may not be able to communicate all of her needs, all of the time but she can do so many things that other kids at her age cannot! She knows her ABC's, all of them no skipping or missing or forgetting. She has 100% letter recognition, lower and upper cases, meaning I can ask her what a letter is (randomly) and she is able to tell me. She can count to 24 (only skipping 17). She is also pre-reading, which means she tries to sound out words. This is not very common and I think it is due to how her little mind works and copes with the Apraxia. She is a very visual child, thus recognizing letters (and letter sounds). I think that is why she is beginning to pre-read. It is amazing! She is also really coming into her own, she loves to make believe, playing dress-up and barbies. By the way, she says on a regular basis "I'm a barbie girl". She got a massive barbie playhouse for Christmas from Santa (who was very nice this year). So many speech therapy opportunities! I am now considering getting her a speech program developed by a speech therapist who has been studying Apraxia for over 20 years. It's called the Kauffman Kit. It is fairly expensive so I will have to wait a little longer but I think that it is now time to get her on a program. She won a free month of dance lessons! Which just started last week. She is taking a pre-combo class, ballet, tap and tumbling. She has been dancing around the house for the last week and a half! We will see what thinks at the end of the month and possibly keep her in it. I think it would be good for her to continue, it will help her with motor planning that isn't related to speech. She is back at pre-school and absolutely loves it. She has a new teacher this year, Mrs. Albert. She is always talking about "my teacher Albert".

We are now officially Gluten-Free! I think it has been about 5 months. It has been a fantastic decision for our entire family. Emily's GI issues are not completely resolved but they are much better. Not only Emily is having success but so is Cameron, Hunter and Mommy! Most of our digestive issues are similar and we are all having great success in our own ways. Going GF is not a easy process, especially for 7 year olds who love peanut-butter and jelly sandwiches. We have learned how to make GF pizza and the kids have fallen in love with broccoli-cheese soup (the ONLY way I can get them to eat broccoli. I now have a few GF cookbooks and I am making homemade snacks (which Matt is in love with and addicted to).

Well, I think that gets us up-to-date for the most part. One of my goals this year is to try and write at least once a week in each of the kids blogs. We love sharing what is going on with us!

Friday, August 14, 2009

Catching Up!

Wow. It seems like I blinked & here we are a month later. So much has happened (as usual).
First off Emily had a upper & lower GI done. They took lots of samples of different areas of her GI tract. She was a trooper! I am so proud of her. Recovery was so much easier then the ear tubes. They told us that was because she was under for longer & the wake-up wasn't so abrupt. Well the results are that Emily has Gastritis & esophagus. So inflammation of the stomach & esophagitis. We still are not sure what kind of treatment plan we are looking at but it could have been worse. I think its more likely that the GI Doctor will want a dietary change then putting her on medications. We will talk to him soon about that.

Emily has started back to Preschool for the year! As expected she loves it. She has a new teacher this year who is incredible. She sends fun little things home for us to work on that are related to school. She also lets me know what Emily has been doing throughout the day. Emily has some new friends that she plays with on a regular basis & loves the arts & crafts. She doesn't cry anymore when getting on the bus but now turns around at the top & says "Bye, Mom".

We also celebrated a few birthdays. Mine was first. Which I got to go to a movie with just Matt! Then came Alex & Hunter's 7th birthday! Wow, I have 7 year old. We all got sick & had to cancel the party. Last was Cameron's first birthday. Emily kept saying "Emamee bir-p-ay" (Emily's birthday). She had so much fun... all of her friends were here, she got to help blow out the candle & help with presents. Everything a big sister should get to do!

Now we are just settling into finding a good routine for all of the kids. It's difficult with all of Emily's therapies, school, play groups & appointments. It seems like we find one that works & then something comes around to shake it up. We are getting used to it all though.

On a side note... The boys are now being Homeschooled through a online virtual public school. Which has been running smoothly. They are really enjoying it & we are spending more time together as a family. We also got a new van!

Sunday, July 12, 2009

New Article on Apraxia Reaserch

There is a new article out this month on Apraxia research. It is very interesting to me since Emily seems to fit right into what they are talking about.

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