Squirrels, Ducks and Coconut Butts!!! A Wish Trip Report *LATEST UPDATE 05/2011**

[cantwaittoseemickey]

Glad to hear you arrived home safely. I hope Pheobe was able to have her mri and ct scan. Please let us know how it goes. I would love to see pics and a tr for your trip Hope she likes her new wheels too!

Hoping you all feel better soon!

 

[TokyoDina]

I'm glad you are home safely!!! We are headed to Agua Linda Farms in Amado this weekend for their Garlic and Onion festival have you been there!

I'm glad you got a new wheel chair! I hope it'll be better for Phoebe.

Geez that's a lot of pictures! Imagine if you'd used film! I think you would have had to charge almost two arms and a leg!

 

[kampfirekim]

I am normally on the camping boards, but just happened to wander over here today. I am soooo glad I found your TR. I was too far behind to read every word, but I thoroughly enjoyed just the same! Don't even ask how many tissues it took to get through your report! I too have a special needs child so this was especially touching to me. Thanks for taking the time and energy out of your busy life to share your experience with us. Best Wishes to you and your beautiful family! KFK

 

[eyor44]

I love wedding pictures. Were either of the girls in the wedding?

 

[kayrosek]

Glad you made it back safley. I'd love to see pictures of your recent trip. I'm homesick for Utah so Utah pics are always welcome.

 

[rcq925]

Glad you guys made it home safe and sound! I hope Phoebe's appointments go well!

Patiently waiting for your next installment! I love your TR!!

 

[yinyanggirls]

Thanks for hanging in there guys. It's been crazy busy. I left off with Phoebe's 24 hr video EEG two days before we left for Utah. These are the times when I feel bad for Phoebe, and even though she isn't necessarily in pain, she certainly isn't having a "typical" childhood. This is when I feel like she "deserved" her wish trip, even though it is an incredible gift and no one "deserves" anything. Know what I mean?

Phoebe during the EEG.

While Phoebe was in the hospital, Tessa went to CA to spend some time with all of her grandparents and a cousin.

Tessa playing with a new puppy (and a very fat cat!) at my in-laws.

Playing with her cousin (in-laws again).

Swimming with my mom.

Phoebe also had appts for her new gait trainer, which the PT didn't know anything about, but we've been using it often and Phoebe loves it. We also picked up her new wheelchair which is much bigger and kind of startling to see her in it. Phoebe also had appts for an MRI and CT last week, which she has had before. This time we did get some results though. This is the first test in over a dozen in her life that showed anything unusual, so I was surprised. Her MRI showed periventricular leukomalacia (PVL). We don't know what caused it because all of the typical causes are not applicable to her. It is basically brain damage that effects movement and intellect. There are still many questions, and the neuro doesn't have the answers but they said the episodes are not seizures. There ARE some sharp waves on the EEG that have potential to be seizures, but they were mostly at night, and not associated with the movements we were questioning. I asked if these waves at night could be what is causing her to wake several times a night and she said it's possible. I asked about a sleep aid and she said to start with melatonin and if that doesn't work there are other medications we can try. The neuro does not feel it's important to pursue the muscle biopsy or spinal tap at this time. Those tests would look for metabolic disorders, which she said are sometimes causes of the movement disorder she appears to have, but since some of the basic bloodwork came back normal she doesn't want to pursue it at this point. She did say that if we wanted to she would, which I appreciate, but we probably won't. We're still digesting the new information. So there's our June in a nutshell.

 

[NiniMorris]

After DS8 had those weekend hookups to the 'machines'...the only thing they could tell me...is yes, he has brain damage (which we already knew) and he is having seizure 'like' episode that appear to be 'situational seizures'...which there is nothing they can do about...

For us it was a waste of time, but we were able to rule out things. Glad the further tests were able to come to a sort of conclusion....hoping thefre is good news coming!


(we use the melatonin at night for DS...could not live without it!)


Nini

 

[Applemomma]

Thanks for the update....I've been thinking of you and praying for you guys. Love the pictures and what's more fun then a new puppy and a pool!

 

[yinyanggirls]

Here are a few pics from our trip to Utah.

We met up with my parents and spent the night in Southern Utah, then the next morning drove through Zion National Park. Phoebe has a Golden Access Passport which allows her and any other passengers in her vehicle free entrance to National sites. It's great! Zion is beautiful and striking. It was hard to catch the magnitude from the car since we didn't really stop until we got to the other side.

Playing in the Virgin River, which flows through the canyon.

The town of Springdale, next to the entrance to Zion, is part tourist spot and part agrarian village.

We spent most of the time at my cousin's house who has three young kids. They have a three story house (basements are big in Utah) and the entire basement and backyard are a kid's heaven. Tessa had a blast. Phoebe played a little with the one year old, but was often bored. She would have been bored at home too, so I don't feel too bad. At least Tessa was out of my hair. They did have a cool park down the street that we played at a couple of times.

Watermelon!

S'mores!

Messy baby face!

My aunt getting a kiss from one of her horse children.

Phoebe LOVED this afternoon. My mom tried to hold her up while she did her happy dance.

Here is a very short video of Phoebe trying to be as close as possible to the horses and my mom not too thrilled with the idea. I laughed when I heard the noise my mom made at the horse, and then the horse did it back!



The kids all took a turn riding Hollywood, a 16 hand gelding. He was huge, but sweet and gentle. When all the kids were done Phoebe kept walking toward him to go for another ride. She burst out crying when we put her in her chair instead of on the horse! She suckered my dad and aunt into letting her ride bare back from the barn back to the pasture. We laughed because Phoebe is usually pretty even tempered and for her to cry over not getting what she wanted just shows how much she LOVES horses.


My dad and an uncle giving Phoebe a "lift".

Beautiful Logan valley.

Tessa playing in the dandelions. I love these candid shots of her doing what she does - exploring the world and loving it.

We used Phoebe's World Passport (given to us by GKTW when we left) to go to Lagoon, an amusement park in the SLC area. It was fun and the cousins really took care of Phoebe.

On the way home we stayed the night in northern AZ, in the town of Page. It's the "gateway" to Lake Powell, the damned up Colorado River. It's huge, and gorgeous and we played at a little beach for an hour or so.

Thankfully we could park right on the beach so the chair didn't have to go too far.

 

[PrincessCaitlin]

Gorgeous pictures!

Looks like you all had a great time!

 

[dawnbu40]

Beautiful pictures! Glad you were able to enjoy a visit with your extended family

 

[Simba22]

Welcome back, Melissa!

I love the pics so far!

Glad to hear that Phoebe doesn't have to go through those extra tests! They sound so painful, I can't even imagine a little girl having to go through that!

Can't wait to hear about the wedding (and of course, the rest of your WDW trip!)

 

[Wee Annie]

Melissa,

your girls are so darn cute it's ridiculous. Hope that the dx is correct, and that you can work with it in some way to make Phoebe's life a little easier.

Zion National Park is gorgeous. Went there on a family trip when I was younger.

 

[eyor44]

wow! that area is beautiful. What a wonderful trip.

 

[maroo]

Wonderful pics!!

You are such a great photographer!

I love the one of Pheobe and your mom with the horses - so sweet.

Looks like it was a great trip.

 

[TokyoDina]

O my Melissa! Tessa is getting so dark! I love how she explores her world! I love your pictures!

I hope what the doctors found can hopefully put you all on the right path to truly figure out what's going on with Phoebe. And I agree I think she totally deserved the Wish Trip!

 

[cantwaittoseemickey]

Beautiful pics! Both of your girls have the prettiest smiles. I just love seeing them Looks like you all had a wonderful trip.

I am glad what you are seeing is not siezures. I am not sure what PVL is but I hope it is something that the dr's can come up with a plan to help Pheobe. I'm sorry the MRI showed something but I am happy that you were able to get some answers.

 

[kayrosek]

Incredible pics Melissa. We have the Golden access pass as well (for DH) and it has given us a wonderful oppertunity to explore some of natures wonders. It saved us a fortune when we spent 10 days camping at Yellowstone when the kids were younger. I hope the fact that they found something with Phoebe's tests this time helps you some. I know how frustrating it is not to have answers about why your kids are sick, and I hope they can help her get a peaceful nights sleep now. Love the pics at lagoon. I pratically spent my childhood there and we have taken the kids a few times while on visits to the family. I'm pretty sure that ride has been there forever.

 

[xanphylus]

Love the pics! I pics of nature like that- beautiful!!! Sigh... makes me wanna go on vacation at a park- and not a theme park! Anyway- glad you guys had a great time!