AFOs & Button

We spent the good part of another day in Fairfax this past Friday.  Our first stop was Orthotic Solutions to pick up Callie's AFOs.  I was surprised that it took over an hour to tweak their fit.  The orthotist added straps and several pieces of foam to help them best fit Callie.  Unfortunately we haven't been able to try them yet because they won't fit into her shoes.  I spent a couple hours today shopping for shoes that would fit them with no luck.  She wears about a 5 1/2 W toddler shoe.  They need to be about a 6 1/2 XXXXXXW to accommodate these things.  Hopefully we can make due to a 6 1/2 XW or XXW if I can find one.  A wonderful man at the Stride Rite outlet tried just about every shoe in the store on her tonight without any luck.  I am hoping I will be able to order a pair online.

Our next stop last Friday was Fairfax Hospital.  Callie was scheduled for another endoscopy (to check for EoE flare ups) and then a G tube swap.  They replaced her PEG tube with a MIC-KEY button.  It is much more compact and I like how the tube does not extend from her tummy any more.  I wanted to go straight to the super low profile Mini One button, but the hospital does not stock them, so we will change to this type in 3 months (the button will be changed every 3 months going forward, which I will learn to do at home).  While it was hard seeing Callie put under yet again, for the first time I did not cry so I guess I am getting used to this routine.  The scope looked clear indicating we are safe with the foods that have been introduced so far (apples, bananas, sweet potatoes, and carrots).  Biopsies were taken to confirm the results.  We will meet with the EoE team next week to discuss her case and next foods to try.

After the hospital procedure we headed to the G tube clinic for training from the GI's nurse.  After I was shown how the button & extension tubing works and should be cared for, we were sent home.  Callie & I were both exhausted and took much needed naps.

Callie's belly seems tender and she is defensive when I lift her shirt to hook up her feeds.  She fussed a little before every meal this weekend, which is not like her.  Hopefully the discomfort will pass soon.  She continues to be a brave little girl who endures so much.  I wish I could take all the pain on myself so she would not have to deal with any of this.  I will wish that for the rest of my life.

Birthday girl on the move!

Callie is now climbing stairs!!

Happy 2nd Birthday!

Happy 2nd birthday, sweet baby girl.  Baba, Owen, and I love you so much!!

Day in Fairfax

We spent most of yesterday in Fairfax, a destination 35 minutes from home with no traffic and 1 hour+ from home during rush hour.  I made the mistake of booking the first of three appointments there at 9:00 AM.  I was sweating it all they way through the rush hour commute, but am relieved to report we made it exactly on time.  Our first stop was Orthotic Solutions where Callie was scheduled to get casted for AFOs.  We recently decided to move forward with the process again since she is getting closer to walking.  She is doing a great job cruising along furniture, but still keeps her legs extended and most of the time goes up on her toes.  The AFOs will stop her toe walking and hopefully help break up her pattern of extension.  Anyway, we made it right on time only to find out they did not have any record of her appointment!  Thankfully the receptionist remembered talking to me and apologized for the mix up.  After a small wait, an orthotist got to work and made her casts.  Callie was not happy with the process, but was thankfully able to be distracted by her iPad and we made it through without too much fussing.  We ended up ordering custom DAFO 3s.  In pink, of course.  They should be ready in about 4 weeks.

We were on our way an hour and a half later, arriving perfectly on time to our next appointment at 10:30.  I scheduled a brief nurse visit at the G tube clinic to have her granulation tissue checked.  The nurse inspected it and told me I am doing a good job with the treatments.  It is getting smaller and will hopefully be gone soon.  She gave me more silver nitrate sticks and we were on our way again.

Our final appointment was right across the parking lot at Children's with Dr. Pearl, her neurologist.  Amazing, but we again arrived right on time at 11:00 (I am always late, so three on time appointments in a day is definitely a record!).  We ended up waiting a while to see him, but the wait is always worth it.  He is so great with Callie and easy to talk to.  He was very happy with her growth and development, and thrilled again that she has not had any seizures.  Our next follow-up will be in 6 months.

We were pretty tired by the time we got home in the afternoon, but happy to have these appointments behind us and glad to have accomplished them in one trip!

Adapted Tricycle

During Callie's PT session at home yesterday and we were talking about how she keeps her legs stiff in extension.  She is cruising nicely around furniture, but looks a bit like Frankenstein and does not bend well at the knees.  We were trying to think of ways to break up her extension pattern and her therapist asked if I had a tricycle that might fit her.  I remembered we bought a tiny one for Owen when he was little.  I ran down to our storage room and found it.  We put her on it, but of course she could not keep her feet on the pedals.  I joked about taping her feet to them and then thought of a great idea.  I taped her Crocs to the pedals!  We were then able to slip her feet in and out of the Crocs!  She seemed to enjoy being pushed around the house and this is a great exercise to get her to bend her legs as the pedals go around.  Isn't she looking grown up?! 

Happy Halloween!

Busy Week

Where have the last few weeks gone??  Time is slipping by quickly.  In fact, I am not sure where the last year went.  It seems like just yesterday, but a year ago this week Callie and I were in Seattle seeing Dr. Dobyns!  I would love to take her back to see him again.  Maybe sometime in another year or so when she has another MRI.  I look forward to showing him how well she is doing.  Wouldn't it be amazing if she was walking and talking?  I can't help but to hope...

The last week has been a little rough for Callie.  She developed granulation tissue at her G tube site.  This means a little extra tissue has grown around the tube which can only be removed by burning it off with silver nitrate.  I took her to the GI's office in Fairfax on Monday to have it done and then was given instructions and silver nitrate sticks to continue treating her at home until the tissue is gone.  Hopefully we can get it cleared up and the issue will not re-occur (although apparently it often does).  Then on Tuesday we had a follow up appointment with Dr. Silva, her ENT.  She has had fluid in her ears which we think could be impacting her hearing, and therefore possibly her speech (still limited sounds and no words).  Unfortunately the fluid is still there.  The ENT is giving it 6 more weeks to clear up.  If it is still there in December at our next appointment he will recommend getting tubes.  :-(  Then on Wednesday I had a discussion with one of Callie's night nurses.  Callie has had a few episodes at night over the last month or so where she wakes up and has a hard time catching her breath.  She is terribly upset during these episodes and takes a little while to settle down and go back to sleep.  It has happened four times now.  The nurses got together and discussed the incidents and suspect she might have sleep apnea.  They recommend that I have her evaluated in a sleep study.  So I put a call into her pediatrician to figure out what to do.  The poor little girl can not catch a break.  

With the doctor appointments plus her therapies, she has NINE appointments this week.  We are both ready for the weekend!!

Crawling!!!

It is with great joy and excitement that I can finally share the news that Callie is officially crawling!!  She has been army crawling since May, but has always had trouble getting up on her hands and knees.  This is an incredible accomplishment for Callie because less than a year ago she was so stiff that we could not even bend her into the crawling position!  Now she can transition from sitting, to side sitting, to all fours, and then make it a small distance.  She still often goes back down into army crawling, but she is improving each week and I know before long she is going to be quickly getting around everywhere and into everything.  We are amazed at how the Lord is blessing Callie and our family.  I cannot thank you enough for keeping our little girl in your prayers!  

Working on walking!

Callie worked hard at PT today!

Feeding Tube Awareness

One of my special mom friends recently shared a link to a site about feeding tube awareness.  I have been exploring this site and am finding it very helpful.  There is also an associated Facebook group and I have enjoyed connecting with some other tubie moms.  I even found some who have EoE kiddos and am looking forward to getting to know them and learning more about what Callie's future with EoE might be like so that I can better prepare.  

Anyway, on the Feeding Tube Awareness website they have a page designed with information for family and friends.  I found that I could really relate to some of their points and thought it would be helpful to share the page so that others might be able to have a better understanding of what it is like for many parents of tubie kids.  

http://www.feedingtubeawareness.com/Family.html