Sunday, July 27, 2008

Happy Sunday!

Happy Sunday! We had a very busy week...Mylee had therapy almost everyday last week and several doctor appointments. She was fitted for her leg braces on Wednesday and was an extremely good girl. She sat on the hospital bed while they wrapped her legs in material that was similiar to a cast and then he cut the so called cast off. These will be used to mold her braces. We have Mylee's first fitting on Wednesday, August 6th. Ironically, this is the same day as our next OB appointment. I can't believe I am almost 12 weeks.

Mylee also had a scheduled appoinment on Friday with Dr. P (opthomologist). Dave and I were almost convinced she would be scheduled for another eye surgery because her right eye has started to cross again. The doctor had warned us that he may need to do a touch up surgery the last time we were in his office. Instead, he changed Mylee's prescription on her glasses and she is to wear them for another 3 months. Our next appointment is scheduled for October. If the eye has not corrected by then using her new prescription, then we will talk about a "touch up" surgery.

Great news on the vital stimulation front! I had a heart to heart talk with the head speech pathologist at Children's Hospital (I probably wasn't very nice) and Mylee will be scheduled sometime in September with a therapist by the name of Lindsay. We are very excited this is somewhat scheduled. Vital Stimulation will be probably our last hope for Mylee in order to swallow properly. We are very anxious to get started! I can't belive she isn't going to be able to eat birthday cake on her birthday! It breaks my heart!! We are still undecided if we are going to cheat a little bit and at least give her a taste of some frosting! I think it will depend on how congested she sounds that day!

We are getting ready to visit Nana and Papa in California. We leave on Thursday of this upcoming week. We are very excited to see our extended family on Saturday at Mylee's birthday party. And of course to see Uncle Will and Auntie Sissy!! We have a lot to do before we leave on Thursday, all I can say is laundry, laundry, and more laundry!

Hoping everyone has had a wonderful weekend! We would like to send a shout out to Nate Heineman, Happy 2nd Birthday kiddo!! We wish we could have made it to your birthday party usual we are late on sending your birthday gift, but no worries because you will receive it very soon!


Saturday, July 19, 2008

July Update

We haven't posted in awhile, I figured I better post something because we were starting to worry some of you! Everything is going well in the Eaton home. I cannot believe how much energy this new little one is taking out of me....I am extremely exhausted all the time! We went to the farmer's market this morning with our great friends Adam & Laura...we had a great time! It was very warm and Mylee didn't seem to be herself, we ended up leaving a little early and went to breakfast at the 5th Ave Cafe. We were able to hook Mylee up without the medical pole, she was in a better mood after she was able to get something to eat!

The past week or so has been nothing really to brag about...Mylee had her last session with her physical therapist at St. Joseph's. We are very sad to leave our great friends and therapist...however, the traveling to and from the hospital was really starting to wear on mommy! We will start Mylee's new PT on Monday, continue with Speech on Tuesday and Thursdays, and her developmental specialist on Wednesdays. Each are one hour sessions. Mylee is also being fitted for AFO's (ankle, foot orthotics - leg braces) on Wednesday afternoon. And we go to see the opthomologist on Friday. Oh yeah, we finally got the go ahead with the genetic testing too, so we will take Mylee to have that completed probably on Monday. It will be a very busy week.

We are also getting ready for Mylee's trip to California, we have a planned trip to see her Nana & Papa Heffelfinger and to have one of her 2nd birthday parties. We are anxious to see our extended family on my mom's side of the family as well as some ot her family memebers who have said they were coming. It is going to be a great time!

Children's Hospital contacted us last week about Mylee's vital stimulation therapy. We are hoping to start this therapy in the next few months. This is really our last hopes of getting Mylee's swallowing muscles to perform the way they need to in order for her to eat normally. We had started to get a little frustrated because we were not getting any answers as to when she would start this therapy. We should hear something by the end of the year for sure! Just in case, we have looked into other options out of state in both Colorado, California, and Indiana to just name a few.

More to come....everyone is doing well, including the dogs! We hope everyone is enjoying the summer weather - we wish everyone safe travels and to have fun!!


Thursday, July 3, 2008

GO D-Backs!!!

It was a great day with all of us together as a family....Mylee was invited by St. Joseph's Outpatient Rehabilitation group as part of the Brandon Webb's K Foundation to attend the Arizona Diamond Backs game. Since Brandon was our pitcher for the game today, he was unable to meet with us in person, however he provided us with a welcoming video...In his place we were greeted by Dan Heron - May Pitcher of the month for the AZ D-backs!! It was a lot of fun....

Mylee was given an autographed picture of Brandon Webb, a Brandon Webb official jersey, a Diamond backs baseball cap, and an official ticket to the game. Dan Heron was very nice and autographed Mylee's baseball cap. You know how Mylee can get when there is too many strangers around and in a crowed room with lots of people....well, as she met Mr. Heron and he signed her cap, Mylee's started to put out her infamous lower lip...this of course made people start to laugh a little (and we all know what happens next....) poor Mylee started whaling and cried for several more minutes until her favorite therapist Miss Nicole started to hold her...she was then ready to go and off we went to watch the game!

Mylee did very well while everyone got to the assigned seats...We sat out in left field in the bleacher section, which worked out well because Mylee was able to cruise along the backs of the seats and stand for a little while, we did this off and on until she finally got too tired and fell asleep on daddy. We did better than we thought and was able to stay until about the beginning of the 7th inning. Apparently we left too early because towards the end of the game, D-backs came back with a vengeance and stole the win from the Brewers!! GO D-backs!! We had a great day!! Lots of Thank you's to St. Joseph's Hospital, the outpatient rehab center, all of her therapist, and especially Brandon Webb's K Foundation for the great day and memories we will have forever!!

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