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!