Easter Weekend

Here are some pictures of the Easter egg hunt that we took Ellie to, as well as a couple of pictures from Easter morning.

Ellie really enjoyed the egg hunt, once she figured out what it was all about. Here are pictures, in reverse order:

No more candy to find - sad girl.

Waiting in the cold for the hunt to start.

Easter morning, after she found the basket the Easter Bunny left for her. She was a very excited girl and kept saying, "The Easter Bunny left presents just for me!"

Easter dress. She had to wear a turtle neck and long pants under it because of the very cold weather.

Look at the treats the Easter Bunny left me!

Coloring Eggs

Last weekend Tim, Ellie, and I colored eggs. We didn't color eggs last year, so this was Ellie's first experience with egg coloring. She had a blast and really enjoyed watching the transformation. She was also really interested in the egg boiling process. I think Ellie's hands are finally dye-free as of a couple of days ago; they were fairly red, purple, blue, orange, and yellow for awhile!

Tomorrow we are hoping to go to a local Easter egg hunt. We tried to go last weekend, but it was either canceled because of the snow or I read the date wrong. Ellie was pretty disappointed that she didn't get to see the Easter bunny and "hold him in my's arms and pat him." She may be still disappointed tomorrow when she does actually see him - and he is just some random guy dressed up in a suit and not a real rabbit!

I have given up trying to figure out the order in which Blogger decides to insert my pictures, so these are ridiculously out of order, but you get the idea.

Spring Fun!

We've been having some fantastic springtime fun lately, with temperatures in the 70's! It came as a complete shock to us when we got a foot (plus some) of snow yesterday. The nice thing about spring snow is that it melts quickly and is fun to play in since the temperatures climb right back up again! I haven't gotten any pictures of the snow, but here are some pictures of the weekend or two before.

Ellie started speech therapy and her stutter is really improving. We are very hopeful that it will pass quickly with all the support that we have lined up for her.

Some pictures of Ellie taken while Tim and I prepared the garden. Ellie "planted" some rocks.






These pictures were taken when I was attempting to photograph my new line of bibs and burp cloths. (They have been selling like hotcakes at the store in town!) Anyway, Ellie decided to help out!

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.