I'm at the breathing stage right now

 

Have you ever had one of those days when you have 3 different doctors with 3 different opinions and a therapy team (with a united front) pushing for something totally different as far as treatment and care? I am having one of those days and I am frustrated and I want to pull my hair out. I realized with our EoE diagnosis that she won't outgrow this. Now I talked to another GI looking for a second opinion who is asking why the heck she has not been tested for gastric emptying issue. I had her at pediatrician today who said we just have to ride it out but how do you explain to your 4 year old that this is the result of yet another food she is loosing? I just want my baby to feel better and as quick as possible.

She is on tons of meds regularly and tonight is swollen and in pain as she is aspirating reflux and reflux is coming out of her nose! She is laying in her bed just moaning in pain.  Nana ran out for emergency popsicles.  I am so frustrated. We gave up everything for her.....and I'd do it all again for her in a heartbeat. She's worth more than anything to us. Sometimes reality and confirmation of things we've thought is hard. J is the same kid he was last night when I was rubbing her back while watching Doc McStuffins. Nothing has changed but now we know that there are some things she won't grow out of....something's that we may have to face in the future that might be a bit different than we thought .... sometimes as a parent of a very special needs child you just have to take a breath, put it all back in God's hands and then go on.... I'm at the breathing stage right now......

Our Next Step in Grace's Journey with EoE

Well it is a gorgeous day here in Texas!  The weather is good for my soul!  We have the house clean and all the windows wide open.  I love this time of the year!  If the weather is good life just seems better, you know what I mean? "Abundant sunshine" is a GOOD thing!

This week has been productive, but low key.  We ordered Grace's new big kid stroller at therapy yesterday.  She has outgrown my beloved purple BOB stroller - not by weight but by height! Her new stroller should be here in about 60 days and is bright pink!  She picked the colors and she is so excited.

On a food front she has actually done decently at meals this week.  The problem is all her new meds make her even "busier" which makes her expend more calories.  With her list of "safe foods" growing smaller and smaller we are having a hard time with calories.  The foods she can eat are all low calorie.  You can't gain weight eating steamed broccoli and applesauce!  Tommy & I talked with our feeding therapist and nutritionist at length yesterday.  They both talked with our GI and Food Allergist.  Our GI called today to say she wants to do another scope and more biopsies on June 18.  We hope that with all the medications and elimination diet that her eosinophil's have dropped greatly, but whether they have or not we must focus on adequate nutrition.  We have two options: go back inpatient for 4-6 weeks and do intensive feeding therapy or put in a feeding tube and give her night feeds.  There are pros and cons to both.  We know eventually the feeding tube will be our only option but we would prefer to keep her on table food as long as possible.  Our goal is 3-4 years.  With her sensory issues I can see the feeding tube driving her crazy - she cannot stand Band-Aids or Kinesio tape on her feet and legs.  If we go inpatient that means another huge block of time away from Cowpoke and it means being in the hospital with Grace and Gator! So please pray for 827 and me.  We have some big decisions to make and thankfully we have some time to really pray hard and research hard.  This parenting road is no cakewalk!

 

 

And just because it is Friday and everyone is in a great mood, here are some silly pictures from today:

 

Gator got a rawhide bone for chewing. I swear he gets anxiety the 2.5 hours Grace stays at school without us!

 

Snack time! A bone for Gator and a fruitcicle for Grace.

 

"Mama! Take-a my pitcher and send it to Y-anie!" - Grace

(She wanted me to take her picture and text it to her big sister!)

 

Bluebonnets

 

 

 

Every.  Single.  Year.  Yes, I am that mom!  I actually did not do newborn pictures with Grace but waited until she was about 3 weeks old and we took professional bluebonnet pictures instead. 

 

 

 

Man times sure have changed! Anyway, Grammy really wanted a picture of all three of her grandbabies in the bluebonnets.  We met up and Aunt L took lots of pictures! The sun was bright, Grace has the goofy four year old grin, Cowpoke is squinting and Cousin C was deadlocked on his bluebonnet.  Hey, she just said she wanted a picture of the three of them.  She didn't say everyone had to be looking and smiling! Lol.  We are going to have pictures taken in the bluebonnets tomorrow.  Hopefully I can at least get my two looking at the camera.  I really love this tradition!

 

 

 

And not to be left out Gator had his picture made in the bluebonnets! We made him go where the flowers were more sparse so he wouldn't crush the bluebonnets and mess up our picture. ;)

 

A Visit To The Vet

Our dear family friend, Dr Marc, is a veterinarian.  He saw our other dog, Molly, who passed away of old age in 2012.  Gator was up to date on all his shots and healthcare needs, but we just wanted to get him a new patient appointment and check up. Saturday morning we were at the Vet Clinic by 8:30am.

Grace was very worried.  She did not want Gator to "get a poke" (aka shot).  Can you tell she goes to the doctor a lot? She was quite distressed when Dr Marc drew blood just to make sure everything was okay.

 

 

 

 

The table lifted up from the floor and she was quite worried that he was going to be afraid.  She kept telling him it was okay and that he was just getting a check up. We took off his vest once the table got raised up so he knew he could relax (Ha!) and enjoy his check up.

 



Grace just laughed and laughed when Gator got his ears checked. As we say at our house, the doctor said Gator was "big and strong." No need for further visits until January when he is due for shots.  827 will just continue doing heart guard and top shot at home each month.

Variety, The Children's Charity of Texas

Last spring we were inpatient at Baylor Dallas for 34 days.  During this time Grace was first assigned a facilities dog - a therapy dog that is a resident of the hospital. The dog she was assigned was named Lily. We got to see first hand how she responded with a therapeutic dog. I was a skeptic when the team first suggested it but I left a believer. Here is a picture since it is #TBT

 

 

Grace looks like such a baby in these pictures! Anyway, when it came time to talk discharge planning one of the things her team addressed was how well she did with Lily when it came to controlling her anxiety. Lily was trained to do stress and anxiety response as a therapy dog. We knew this was something we wanted to pursue for her to have at home. We talked to the Baylor staff and began pricing trained animals. We found the price range to be between $18,000-$30,000. We did not have  that kind of money and insurance did not cover a service animal.  The social worker at Baylor encouraged me to write grants for a dog.  She suggested a few sites and that is what we did. Our biggest funding partner was Variety, The Children's Charity of Texas. This amazing foundation helped make Gator a reality.  They rely on generous donations from people across Texas.  On Tuesday we had a chance to represent Variety at the Dallas Stars Game where they got a donation from the Stars Foundation. We are so thankful for people and organizations that support Variety and make dreams like Gator come true.

 



The "Wedding Princess"

Grace was the "Wedding Princess," otherwise known to the rest of us as the flower girl, in her Aunt's wedding on Saturday.  We had done a lot of practice and talking about this big day. We watched flower girl videos on YouTube (being careful to avoid the blooper videos) and we practiced walking and throwing petals in OT and PT.  Grace does not like people looking at her and I was very worried about how this was all going to go down.  She was uncooperative once we got to the venue and she did not want to work with the professional photographer. I will be surprised if she got a single picture of her. She refused to take off her black leggings and to wear socks with her dress shoes. I had purchased ruffle socks and she was wearing dress shoes without her "magic shoes" and she was having none of it.  We were in the bride room and she was in full on meltdown after we had attempted pictures. Just keeping it real, so here is a picture -

 

I sent out an SOS prayer request to a few close friends and thankfully they did pray and within about 20 minutes before go time she had calmed down and transformed her attitude, although she was still wearing her black, faux snake skin leggings and no socks. What can I say, compromise is the name of the game.

 

 

Several of you have asked, but Gator did not walk her down the aisle.  My sister and her husband have a dog named Brinkley.  Brinkley was a big part of the proposal and she was the "ring bearer" for the wedding.  Of course Grace has not met a dog she doesn't like so she interacted with Gator those last 15 minutes before she went down the aisle. She threw her flowers and went down like a pro. Phew! 827 wisked them home about 8pm as she had had a long day and was over stimulated at that point.  We were all happy with how she handled the wedding weekend over all and best of all they are "married up!"

 

 

 





Leadership Richardson & the NEW Methodist Richardson Medical Center

Gator got to go last Friday, April 4, to the NEW Methodist Richardson Medical Center! The medical center was not open and receiving patients yet at the new location. Gator got to go with 827 and present on service animals and all that they can do for their humans. From what I have been told it was a great day and he was very well behaved. Here is a picture with Gator and the leadership team.