Some Fun

A couple of weekends ago we went and played at a nearby park. Ellie loves to throw rocks in the creek and could do it for hours on end if we let her!


It was hard to pass up taking a picture of Ellie with this Mastiff; it isn't everyday you find a dog that is *this* much bigger than you! (As you can clearly see, Ellie has absolutely no fear of dogs whatsoever!)



Playing in a "dinosaur egg" sculpture at the park:


Throwing rocks:




On the stuttering front things are okay in some ways, worse in others. Overall, the amount of stuttering has dropped from being 50% or more of her speech, to being only 10% or so. On the surface this is good; however, the drop has been accompanied by an increase in her secondary behaviors. She blinks hard, clears her throat, holds her breath, and restarts her sentences in order to get through a tough word. Her speech is better in the morning and when she is calm than in the evening or when she feels rushed. We are seeing Dr. R tomorrow at the local university to have her evaluated and possibly referred for speech therapy. We are very interested to hear what he has to say.

We'll keep you posted!

One More Thing

After writing the post below, the phone rang and I spoke with "Dr. R." (Sorry, but I'm not going to use his real name, as he is very prominent in the country, and I still am not ready to give up our location in the "real" world!) He is the leading researcher at a university near us. He gave us a realistic view on Ellie's prognosis (75% chance of a full recovery before age 6) and also agreed to see her. Yay! I was ecstatic that someone was finally ready to give us a full evaluation. Based on the information I gave him on the phone, he agrees that she should probably start therapy ASAP for the best results.

We won't know exactly when her appointment is until Monday, but I am glad to go into the weekend knowing that we'll get some solid answers soon! (Even if we do have to pay out-of-pocket for those answers...)

Hanging In

Ellie's stutter has worsened in the last week. She is holding her breath when she can't get a word out and then the word kind of "explodes" out of her. She also has started clearing her throat when she is stuck. This seems to help her get past the hard word. She had one episode last weekend where she stuttered so hard that she started crying. I was so glad Tim was here when it happened - I had to excuse myself quickly and go sob in our bedroom. I hate seeing her struggle like that. Overall, though, she is still her happy self :)

We had a screening with the school district today. They said that Ellie's secondary behaviors (the blinking, throat clearing, breath holding) are "very concerning" to them, but they won't refer her for services because of her age. They said they have never seen those behaviors in a child so young and aren't set up to begin treatment at this age. Their recommendations are for us to seek private therapy for now and begin building a case as to why Ellie should qualify for services. We are supposed to video her, log the progression of her stuttering, and basically convince them that Ellie needs help. I left feeling very frustrated. Basically they said, "Yes your kid needs help. Yes we are concerned and you should be too. But no, we are not going to help you."

The odds are still on our side. I have put in more phone calls today. We happen to live 15 minutes from a university with a large stuttering research center, as well as 5 minutes away from a leading practitioner.

I just wish people would quit telling us that Ellie is too young to be treated. The reasoning behind what they are saying is that kids her age aren't "true" stutterers because their language is still developing. When they stop and listen to her, though, they are all speechless and can't believe she has developed so many secondary conditions at her age. They just say that they don't know what to do about it, other than for us to wait. But the research says that if we wait, we jeopardize her recovery chances.

Sorry to vent with such a negative update, but I am feeling so down about the whole thing right now. All parents want the best for their children and don't want to see them suffer. Ellie overall is still very happy, but she is very aware of what is going on and gets very frustrated. I hate watching her work so hard to say things that 3 weeks ago came out so easily.

Struggling

It has been kind of a tough week. I debated long and hard about blogging about it. Ellie received a diagnosis on Tuesday that I am not sure is really mine to talk about. If it clears up quickly, no big deal; but if it lingers into adolescence, then it is her choice what she wants out there.

I initially imagined a vague blog post just to ask for your thoughts and prayers. (See, now it is starting to sound like something much bigger than it really is...) But, I decided that this is something Ellie is dealing with right now, so I might as well document it on her blog. If the problem lingers I may reassess.

On to the diagnosis. When we got back from our trip to Idaho last week we began noticing that Ellie had started repeating phrases at the beginning of a sentence. Sort of like revving up, if you will. On the 4th, at her well-child check-up I talked to the doctor about it. I was assured that it was completely developmentally normal - especially given that Ellie talks in 7-9 word sentences. By last weekend her speech had deteriorated to the point that she was repeating single words and initial syllables at the beginning of a sentence. This was becoming more than 50% of her speech. She would turn red in the face and tense her entire body when she would try to talk. She also developed a hard blink to try and get past the hard word. I took her back to the doctor on the 10th and she was diagnosed as having a stutter.

Since then I have spent countless hours researching what our next steps should be. I spoke with a nationally-known specialist in the field of stuttering. Amazingly, her clinic is 5 miles from our house! I am meeting with another speech therapist this afternoon and Ellie has an appointment next week to begin the screening process to find out if she qualifies for (free!) therapy through the school district.

All-in-all, the odds of a full recovery are on Ellie's side. Because of her age, and the fact that she is a girl (boys have a harder time with language development), she has an 85% chance of spontaneous recovery within the next 6-12 months. That seems like an eternity to us.

The wonderful specialist I spoke with this week (Mary) has given us "assignments" to do at home and ways to modify Ellie's environment to give her the best chance of recovering on her own. We will be in contact with her weekly until we see a change (positive or negative) in Ellie's speech. If she takes a downward turn, or hasn't shown improvement within the next 6 months, we will start private therapy with Mary. We also have the school district screening that will match Ellie with a speech therapist who will come to our house for therapy, if she qualifies.

While we have been taken totally by surprise at the sudden onset of her stutter, we remain thankful that this is the only thing that Ellie has ever had "wrong" with her. She definately notices her stutter and gets frustrated at times. Overall though, she is her same, happy self - which we are also very thankful about!

Those of you that are relatives reading this: Please let me know if there is *anyone* in the family you can think of that had (or has) a stutter. This is an important component to Ellie's "recovery." Stuttering often skips generations, so even if it is a great aunt or uncle, or a great-grandparent, let me know! If we find a genetic link, it will change the intensity of Ellie's speech therapy.

Look Who's Two!

Here are pictures from Ellie's birthday. We had a party with my side of the family in Idaho just before her birthday (one more free airline ticket before they start charging us!). The other pictures were taken when she was opening presents from Grandma Cheryl and Grandpa Bob on her actual birthday at home.

Blogger has (once again) changed the order the pictures upload in. Just when I thought I had it figured out... So sorry, they are in a bit of a random order!

Getting Caught Up

We just got back from Boise to celebrate Ellie's 2nd birthday. I was given more than a subtle hint by Aunt Jan that she wants the blog updated - so this one is for you!

Things have been busy here. I usually use Ellie's nap time to update the blog, but I have been working like crazy on my sewing business during this time lately. I have a new website that will be open for business soon and I have expanded my line of products. I'll let you know when it is all ready so you can visit!

Ellie has been changing so much! She is very much a toddler and not a baby. I'll give you the "two-year-old" update when I get her birthday pictures up this weekend.

Meanwhile, here are pictures from Christmas. (Blogger uploaded them in a very strange order...)


Reading a new Christmas book from Aunt Ruth.

Playing at Grandma and Grandpa P's house the day after Christmas.

Family shot at Grandma and Grandpa P's house.
Grandma and Grandpa P's house. It is so beautiful, hard to believe Tim's dad built it himself!
View from their house.
Grandma Cheryl and Grandpa Bob's house on Christmas Eve.
Reading with Grandpa Bob Christmas afternoon.
Playing with Grandma Cheryl.
Opening presents. Wearing the hat her cousin Eddie made her and trying to put on pants from Grandma and Grandpa B.
Playing with her new gifts - stroller from Grandma Cheryl and Grandpa Bob, bear from Jordan and Josh, and hat from Eddie.