Spring time has finally (Maybe?) arrived in Texas!

What a GORGEOUS weekend we were blessed with! The kiddos were thrilled to have a ton of outside time and Gator was pretty happy too.  Saturday morning everyone was up and at it pretty early.  Gator is on a feeding schedule of 7am and 4pm.  You can set a clock by his stomach.  He is standing at his chow bowl at 6:55am and 3:55pm. He woke Grace up and she woke me up, "Get up Mama! Gator needs his breakfast bites!"  Cowpoke got up soon after and we decided to head out on the area hike and bike trail.  Usually Grace can't walk more than about 1/2 mile without having to get into the stroller or be carried.  With Gator she walked almost a whole mile! Woot-woot!

 

 

Gator loved being able to go and go! We didn't make him wear his vest but we did make him use his service leash.  He did an awesome job taking commands from me, Cowpoke and Grace! We all had to take a turn walking him. 

 

 

Eating out is rare as there are no safe resturants for Grace but we do have a treat that is okay - SNOW CONES! We have a snow cone place in our town that is safe for Grace.  Cowpoke is allergic to Red dye #40 and I try to not allow either of them any artificial coloring but since we are so limited with treats I allow a snow cone every couple of weeks in the spring and summer. Cowpoke wanted to call Nana and invite her. She hadn't had a snow cone in a long time and really enjoyed this time together.

 



 

 

Yesterday was his second Sunday at church.  He did awesome!  Grace was restless.  She liked the music and was good during that but anyone who knows her in real life knows she is not a "sitter" and she was quite busy.  #827 took her out and walked them both outside on the gorgeous church property.  She was quite happy as soon as she got outside!

Today was back to school for Grace. Her little school goes for 3 hours a day. Gator can go if I go, but honestly we aren't ready to start that yet. Maybe in the fall for pre-k and definitely for kindergarten, but right now I need those 3 hours a day to get things done.  Gator walks her in to school and then Gator and I leave after lunch.  He whines when I put him in the car and sits at the door whining until we load up to go pick her up. Can you believe he has only been home 9 days? He knows she is his girl and he doesn't like when she is gone.

Have a blessed week and enjoy the beautiful weather!  If anyone has any questions I am going to start answering questions on Grace and Gator on Wednesdays here on the blog.  Feel free to email anything you have wondered about to graceandgator@gmail.com.

Precious Friends

I have been BLESSED on this journey of parenting Grace to meet a lot of amazing families. We have been surrounded by people who are in the trenches with us and that really want to do whatever they can to support us and our beautiful girl.  Grace needs routine and structure as much as possible, because she is 4 years old.  Our schedule is busy with therapy appointments, doctor appointments and school but we work hard to maintain friendships and play dates with other children (and moms!) so that we can work on social skills and just experience life outside of the special needs world.  I wanted to include some pictures of Grace and some amazing friends we have really connected with over the last year or more. God is so good to us and I am thankful to have all of you as friends!

 

 

 

It means so much to me, as Grace's mother, for her to be included in birthday parties, play dates and special events like any other child her age would be.  She may not be able to eat anything and she may not participate in the activity but just being included is huge! I appreciate everyone who reaches out to us and includes Grace everyday. It means a lot to her and it means a lot to me.

Life In A Special-Needs World

The April 2013 issue of Parents Magazine has a huge section on special needs children.  It has one section on different perspectives of how special needs parents want to be treated and received.
I read the article as I sat at the hospital waiting on Grace to have her tests last week.  I thought it was spot on.  Then a precious friend called me this week to ask if I had read it.  I told her I had and it was right on spot for my life.  Take time to read "Life In A Special-Needs World: How Every Parent Can Help Kids of All Abilities Thrive. I wanted to share one small part of the section (It can be found on page 65.)



What moms of children with special needs

wish other parents knew . . . . .

 

 

"I may look tough, but know that I am as fragile as my child.  I just don't have the option to show it."

 

"Please don't tell me to just relax.  There is always something to be done: doctor appointments, therapy appointments, insurance people to talk to, papers to be filled out, extra encouragement and praise and attention to be given.  It's exhausting."

 

"We often can't do activities other people with kids the same age do, [but] I still relish the adult friendships [with moms whose kids don't have special needs]."

 

 

 

 

 

 



Hit with the stomach virus

So after a really good day yesterday, Grace got hit hard with a nasty stomach virus.  She was not keeping anything down.  Then then the fever started and I got really concerned.  She did not want to be held she was just shivering, while burning up with fever. She wanted to lay in the cold tub and I was just switching out towels when she would get sick.  Gator was very concerned about his girl and kept careful watch over her.

Thankfully she was able to get some Zofran down about 3:30am and then kept her Tylenol down about 45 minutes later.  Her fever finally broke and she slept about 3 hours.  I was getting Cowpoke ready for school and called our therapy office as soon as they opened.  I told them we were not coming today and she was sick.  I think my kids are only sick on Tuesdays, as that is when our pediatrician takes her day off.  We saw another doctor in the practice who she responded very well to today.  The verdict is just a nasty stomach bug.  She already has a low immune system because of her GI issues and now that she is taking all these steroids for her EoE we are going to get even more wonky things.  If the germs blow by in the air it will be our luck to catch it. So she misses school again. She made it one day last week.  We will pray she feels better for Thursday.  The good news is that this virus they are seeing runs about 12 hours, but because it is so intense he said her stomach may ache and be sore for 2-3 days. Hopefully she is on the mend.  She asked to watch Frozen so I know she is feeling a little better. :) Thank you for always praying for my girl! 

 

 

And happy Cerebral Palsy Awareness Day 2014 to all our fellow CP families!

 



Why does Grace need a service dog?

Several people have messaged about Gator and how he helps Grace. Gator will smell for dairy and soy proteins (although her current list of banned foods is much larger than just dairy and soy), he is anxiety and stress response trained ...and he will do gait assistance for her falls because of her cerebral palsy.

 

When Gator has on his vest he is working. Working means he has to focus on Grace and he cannot be distracted. When he has his vest off and is home he can be loved on and petted and talked to. He knows his job is to protect Grace, but he knows he can relax when his vest is off. If you want to come by and see him and let your kids see him at home where he can be petted and loved on just let us know. We would love to have you come by! Today he got to meet Grace's precious friend and neighbor. We showed our friend how Gator is attentive to Grace when his vest is on.  When his vest is off he is a love bug who just wants your attention.

 

 

 

 

 

Welcome home, Gator!

Welcome home, Gator!  After learning we were matched with Gator in August we have been looking forward to this day! Gator is coming home! It was about 6 weeks earlier than we had first anticipated but we found out about a week ago that he had passed all his tests and was ready to come home! Saturday morning we woke up early and traveled the ninety minutes to Gator's training facility.  It was the first time Grace had laid eyes on Gator and she was over the moon excited!

There is something about the bond between a service dog and his owner.  The bond was instantaneous! We stopped at Cabela's on the way home and he had his first public experience with us as his handlers. He did fabulous!

Sunday he attended church with us - 850+ people and a rock band praise team!  He did great - several people talked to us after we were seated and did not even notice he was there!

After church Grace had to do her daily training walk with him.  He is used to responding to commands spoken with authority.  Her baby voice is not very authoritative so we have to work on that.

 

 

Today (Monday) we went to the eye doctor in Fort Worth.  I told Daddy this was trial by fire - I was taking Gator and Grace to the doctor and on my own for the very first time.  I was the only nervous one!

 



Gator was very attentive to Grace.  Even the doctor commented how he watched her and was constantly making sure she is okay.  When her anxiety started to go up and she was resisting the glaucoma test he put his head up in her lap in the exam chair.  He kept nudging her and making sure she was focusing on him and her breathing calmed. I think he is going to be an amazing blessing!

This is just the very beginning of a beautiful relationship.  I am overwhelmed with gratitude for everyone who helped make this happen - from helping fund Grace's adoption to helping fund Gator and his training.  God is good and he is faithful. His love never fails as evidenced again and again.

3 days of doctor appointments

So we started off a wild week of doctor appointments last Wednesday with a trip to see our food allergy doctor.  When we got the results of her scope and biopsies everyone was quick to get us in.  Because we were a work in it meant a 7:30 am appointment in Dallas, but I am not complaining as we are so thankful for a wonderful team of medical professionals caring for our girl!
Our food allergist looked at all the food logs I keep on Grace for feeding therapy.  He talked with us about her biopsy results and the fact that this disease of EoE is rare and of those that have it she is in the severely diseased category.  That is never good to hear.  He said because of her eosinophil levels in her esophagus that we are going to take drastic measures.  He took all dairy, soy, wheat, eggs, shellfish, fish, tree nuts, peanuts, coconut and beef out of her diet. We are going to go 90 days on this elimination diet and she also is on prednisone, swallowed flovent (in the inhaler) and she is on a pulmocort surry - liquid pulmocort (like you would use in the nebulizer) mixed with maple syrup and swallowed down to coat the esophagus.  This medicine does not taste good and she has been very resistant. The good news is that I don't know if it is all the steroids or the foods being eliminated from her diet, BUT PRAISE THE LORD OUR GIRL IS FINALLY EATING!!!!!!! We are so thankful and excited! She is actually asking for food!

Thursday we met with our GI who had talked a lot with our food allergist.  She agreed with thing everything and we have decided to start treatment in Dallas and see what our numbers look like when we rescope in 90 days.  If we can avoid going to Cincinnati we would prefer that.

 

 

Friday we had to be at Cook's for the MRI of her brain and from her hips to her toes.  She also had quite a few genetics labs run as well.  She was really good before her procedure and I believe that was because so many people were praying for my girl! She really LOVED this chair in the waiting room. Once they took us back we even worked on some school work.

 

 

They even had the therapy dog, Chanel, come by to see my little animal lover.

 

 

 

When she woke up from the procedure she was a bear. She pulled off the leads and the pulse ox. I was trying to tell the nurse that she hates any type of tape or Band-Aids because of her sensory issues.  The nurse tried to tell me the IV and leads had to stay on for two hours after the procedure.  Well she had that IV yanked out and blood squirting all over Daddy within about 3 minutes after that conversation.  The nurse told me she didn't realize she was that sensitive about the tape.  I told her welcome to the world of sensory processing disorder.  Once we had the bleeding stopped she quit crying and sat in the bed and ate two popsicles.  All was now well in her little world.

 

Here she is snuggling with me right before we went home.

 

 



Joshua . . the boy with no safe foods & EoE

We have had a lot of questions this week about Grace's new diagnosis of eosinophilic esophagitis. It is different, and sadly much worse, than even dealing with her FPIES to dairy and soy. We are quickly trying to learn everything we c...an as we prepare to meet with our team and see if we proceed with care here in Dallas or go to Cincinnati Children's where they are doing ground breaking work in eosinophilic esophagitis. We spent much of today watching webinars with http://www.apfed.org/drupal/drupal/webinar_series

 Joshua was featured on Anderson Cooper's television show in March of 2012. He is fed by a tube that is directly inserted into his stomach. He has NO safe foods that he can eat. Eosinophilic Esophagitis is a rare and serious medical disease with NO CURE. Please help to raise awareness and find a CURE for Joshua and Grace.

http://youtu.be/-aBrhi0ZK4U

Eosinophilic Esophagitis (EoE)

Wednesday's procedure did not give us the results we had hoped and prayed for. I cried in the consultation room with the doctor and told her I was tired of my baby having more and more challenges thrown her way. God quietly whispered to me that He is greater than diagnosis codes and prognoses.

Grace has moderate diplegia cerebral palsy, acute Food Protein-Induced Enterocolitis Syndrome (F-PIES) to dairy & soy, sensory processing disorder and generalized anxiety disorder.  She is limited in the foods she can eat and is still dependant on medical amino based formula for the majority of her daily calories. We spent May & June 2013 at Our Children's House at Baylor Dallas in the inpatient feeding program. Grace and I worked with a team of OT's, PT's, ST feeding specialists, a pediatrician, awesome nurses, a psychologist and a social worker to try and teach Grace to eat table foods. She made some progress considering when we went in she only ate about 5 foods, but her volume of intake has been horrible. We continue feeding therapy three times a week as an outpatient and while we were increasing the variety of foods she was not eating more than 16 bites/swallows in a meal and was not getting enough calories.

In January our awesome speech therapist went to a training on pediatric feeding disorders and diseases. One of the diseases they covered that day was Eosinophilic Esophagitis (EoE).  When we came in for therapy that next Tuesday she told me about the conference and how the entire time that they were going over EoE she was thinking "that is Grace!"  She asked me for permission to contact Grace's GI doctor. I agreed and after a phone conference and some research they both agreed she needed to be scoped.  My husband and I agreed hoping to rule out that she did not have EoE. When our GI came into the room before the scope I asked her, "What happens IF she has this?" She told me we were going to pray she did not have EoE and we were not going there unnecessarily. When she walked into the consult room after the scope and I saw the color pictures in her hand and saw the red irritation, swelling and bleeding I started crying. She didn't have to say a word. I knew. She went through the pictures and told us she was so sorry. She took 8 biopsies and those are what will give us the official diagnosis when we meet on Thursday, March 21. She did mention the elimination diet and I have looked at that. Grace loves peanut butter and that is on the list of things to eliminate. I don't even want to go there yet. It just stings my Mama heart. I mean how much can one little girl be burdened with?

Thank you all for your love and prayers. Please keep them coming as we figure out how to navigate life and these new challenges and find joy in the journey. Leaving you with a picture of our girl waiting to be taken back.

 

 

To learn more about FPIES go to: http://fpiesfoundation.org/

 

To learn more about EoE go to: http://www.eosinophilicesophagitishome.org/

Welcome

Hi! Welcome to my blog! My name is Alisha and I am the blessed Mama to Cowpoke (7) and Grace (4) and wife to #827, who is a police corporal in the metroplex. My Grace has some special needs and for about the past two years people have been encouraging me to blog about our journey. I am finally giving in. This is a therapeutic place for me to vent and somehow I hope it can encourage you no matter where you are in your journey.  We called this site Grace & Gator. Gator is Grace's service dog that is currently in his last 90 days of training. He is going to provide a wealth of services to Grace and help her to enjoy this world we live in.

 

 

 

I love this picture of my babies! It was a lucky shot one Sunday after church. I am so thankful God chose me to be the mother of these two precious blessings.