Melancholy Girl and FROZEN paraody

So on Saturday we left Gator with Mr. Jason in Boyd for 2-3 weeks more of training. He was a super fast learner when we was in training before so we are hoping he still is.  We went to Cabella's on the way to Boyd, Texas.

Shopping with Daddy & Gator Dog



After we left Cabella's we told her we had about 40 more minutes and we had to leave Gator.  We had been talking about this for almost two weeks, but now she realized we were serious and she was not happy at all.

I love my Gator Dog!

Uh-uo . . .  This is really about to happen?
 

So we left Gator and are praying he does his refresher and learns his new skills quickly. Miss Grace is NOT at all happy that he is gone and she has been emotional and having meltdowns like we have not seen in a long time. Pray for her. Pray for Gator as I know he misses her. Pray for me and 827. The days are dragging by. I had come to take for granted the ease at which we were finally adjusting too.

Melancholy girl

 

Practicing our letter writing in shaving cream. Pre-K homework is messy & fun.

Being a snake in a pit at OT

After church fun at Target
 

So we all know Miss Grace will eat very little table food.  We have actually stopped feeding therapy until we go inpatient in January.  I (selfishly) wanted a holiday season with very little stress.  Feeding is extremely stressful for Grace and for me. So we are on a break for a few weeks and she is enjoying as many tapioca bread and sunbutter sandwiches as she wants.  Forget trying to get a vegetable in her.  This morning at therapy one of the other feeding Mom's shared this video with me.  I died laughing. Grace doesn't just refuse vegetables, she refuses almost everything, but the frustration of the parents and the lengths you go through to get your child to eat are so very relatable.

Do you want to build a snow..errr.... eat Broccoli?
Does this look like your house at meal time?
As a family that has watched Frozen 100 times and listened to the soundtrack another 12,596 times, we now equate our nightly plight to get our 4 year old to eat to Anna, knocking on that door, ever so sweetly trying to coax her sister to break out of the rut and join her in a better, healthier life. And that's why we had to make this song.. Who knows? She's such a Frozen addict, maybe this'll get her to eat Broccoli.


So with that I leave you with this giggle . . .

Gator & his CEU's

This Saturday is going to be a sad day at our house.

We are sending Gator back to his trainer, Mr. Jason, for 2-3 weeks.

Like humans who need continuing education instruction to perform at top level for their jobs, the same can be said for service dogs. We have known for a few weeks this was going to happen, but it isn't making it any easier on Miss Grace. Gator will get some remedial training in some areas and some new training that will help him to go to kindergarten next fall. We had originally planned for this training to happen in the spring, but since we are facing a lengthy stay at the hospital for feeding therapy in the spring, we needed to go ahead and get it done.

Please pray for Miss Grace and for Gator. They are going to be lost without one another.

Watching his girl at therapy this morning.

"Pray for me. This is one of our better days."

 

Miss. Grace had a rough afternoon yesterday.  It was an overly sensory day - her shirt itched, she had to wear two different socks, the rubber band in her ponytail was making her hairs hurt and on and on. It was not pleasant.  She had a major meltdown before it was time for our special needs support group at church and she shoved our 50lb wooden bench over on the top of my foot in a kicking screaming foot and in the process taking off all the skin on the top of my foot. Oh joy, right? I was having to breathe deep and remind myself that this parenting thing is no joke.  Even Cowpoke was quiet and keeping away from her and usually he is trying to help me calm her down. It was one of those evenings where I count the seconds until bedtime. Yet when I was rocking her before bed, after doing her therapeutic massage, she looks up at me and says, "I love you, Mommy." And my heart melts.

 

 

 

So 4:45 am came very early. Everyone who knows me in real life knows I am not fully functional until about noon so I was not running on all cylinders. Thankfully traffic was not bad that early and we checked in on time.  Miss. Grace started hollering as soon as we pulled into the parking lot that she was not going to surgery. I just smiled and grit my teeth. We come to this hospital during the day to see our local GI but I guess she has not caught on to that yet. She only knows that early morning = procedures and anesthesia. We got inside and she went straight for the fire truck cozy coupe.  It has these loud sirens and flashing lights on top.  Of course at 4:45 am she was laying on the lights and sirens.  Thank goodness for Gator because at this point my head was pounding.

 

 

And then all the sirens made the baby in the room next to us keep crying. I just wanted them to take the darn thing away but they didn't want to set her off. So in came child life with bubbles. . . .

 

 

Then came time to head to the procedure. We do not use vercid ("silly juice") as she has a hard time after anesthesia and vercid makes it 10x worse.  She wanted me to take her picture with her unicorn to send to Daddy. I was about to take her picture when the OR nurse opened the door. Her face fell and the drama began. Today it only took 3 of us to hold her down and only about 2 minutes for her to fall asleep from the gas.  Now my torso has the bruises to prove the battle.  The pregnant anesthesiologist said she gets vercid next time and I said, oh no. That just makes it so much worse. 

 

 

Gator and I went out to the waiting room where we observed lots of other people waiting for loved ones and friends. Oh the conversations you can overhear while in the hospital waiting room.  Let's just say there are currently no ebola patients in Texas, there never were any ebola patients at this hospital and you cannot get ebola from having a routine colonoscopy. Now moving on . . .



 

 

Gator and I had just gone back to join her in recovery and they took off her oxygen and took out her IV.  I was about to take her picture and her eyes popped open.  Her pupils got really big and the screaming began.  She was angry and she wanted out of there. She was hot and she wanted to lay on the tile floor. She wanted a Popsicle, but not that color and not from that nurse. She did not want the pulse ox taped to her finger or her toe. She thinks the oxygen mask smells funny. The bandaids and tape are hurting her. She wanted a cold wash cloth, but not the kind they had. The electric leads are "breaking [her] heart." She wants to hug Gator but he has bad breath and "his tongue is stinging my body." And on, and on, and on.  It was over 90 minutes of kicking, screaming, hitting, hair pulling and head butting. Finally I told the nurse we have to get out of the recovery bay. You know there have been several days recently where I have felt like we have made major progress in her sensory processing disorder. Then we go through 24 hours like we have just had and I realize we are no where close to outgrowing this.

 

On a positive note her pictures of her esophagus looked good. The top of her esophagus looked better than it has since March.  There was one questionable area. They took lots of biopsies. There was no yeast growth which is awesome! Because she takes so many steroids that is always a big risk.  Because EoE is a biopsy based disease we have to wait to see what the biopsy results say. Those will be back in 5-7 days. We are praying for low numbers (less than 15) so we can keep turkey and corn and so we do not have to increase her steroid doses.

 

Thanks for praying my friends. I had so many text messages this morning and it was just a relief to know so many of you were praying for me and for Miss. Grace.  This is a journey and sometimes it is exhausting. I am thankful that on the challenging days when I want to go back to bed and hide my head under the pillow that I have your encouragement, your prayers and your love. 

Teal Pumpkin Project

This Halloween, FARE (Food Allergy Research & Education) is encouraging communities to start a new tradition that will help make this holiday season less scary for children with food allergies: the Teal Pumpkin Project. This campaign encourages people to raise awareness of food allergies by providing non-food treats for trick-or-treaters and painting a pumpkin teal - the color of food allergy awareness - to place in front of their house along with a free printable sign from FARE to indicate they have non-food treats available.

The Teal Pumpkin Project is designed to promote safety, inclusion and respect of individuals managing food allergies – and to keep Halloween a fun, positive experience for all.

Our 4 year old daughter has severe food allergies. You have probably seen us out and about with her service dog, Gator. He smells for dairy & soy proteins among other jobs. In the past fun childhood experiences like trick-or-treat have been forbidden as she cannot have dairy, soy, wheat, eggs, peanuts, tree nuts, fish, shellfish, coconut or beef. And although it seems crazy, those 10 things are in almost everything - including play dough! This year we are excited to participate in the TEAL pumpkin project. You may have seen it on Facebook or on the news. Our house will have a TEAL painted pumpkin out front and we will be handing out glider planes, fake rhinestone rings, rubber duckies and some super annoying ghost whistles. We will give these treats to all trick-or-treaters, but if you know of an area child who also suffers from food allergies please let them know we are a TEAL pumpkin house and will be handing out toys for treats. We look forward to being able to participate in a safe way this year.

http://www.foodallergy.org/teal-pumpkin-project

If you are a local family and don't have our address then message me and I can give it to you. 827 says we can't post it on the blog.

Picture update - Is there such a thing as a photo blogger?

 

 

September ended on a busy note!  We had a follow up with our food allergist. There were no real changes in her care plan.  She gets anxious when we go there as she expects blood work or skin testing. This time she got neither and she got to leave with two FROZEN stickers. It is the little things that make my baby girl happy.  Even without having lab work she was eager to get out of there.

 

On September 27th Miss Grace enjoyed a day at the Kimbell Art Museum in Fort Worth and a trip to Steel City Pops.  Safe treats are hard to come by but at our food allergy appointment the nutritionist told us that they had safe options. We were excited to check them out and Miss Grace loved her strawberry popcicle so much that she ate TWO! Please note not all of their pops are top 8 free so please ask.

 

Each September our church sets aside a Sunday to give back to the community in one massive effort.  Now we are blessed to serve and be apart of a church that gives back to our community and around the world all year long, but this dedicated Sunday we all serve together all across our county in a massive effort.  Our family served at Cowpoke's school. They guys helped assemble and stain picnic tables and lay rebar for a concrete pad.  Miss Grace and I planted and watered lots of pansies and then we worked in the library taking apart workbooks and sorting the pages for the kindergarten teachers.  I love teaching our kids that it is better to give than to receive.  This year Grace truly understood what we were doing and why. Of course after we worked we had to play.

 

 

She got to check out her very first book from the school library! Boy was she proud! And Grammy bought her a book of Fancy Nancy fall stories. She has really enjoyed that! Fancy Nancy is fabulous!

 

On Saturday, October 4th we spent the day at the State Fair of Texas! This is an annual tradition we have had since before we married.  We get there at 9am when the gates open and eat breakfast at Owen's, as was 827's family tradition with his Daddy.  Then we spend all day at the fair and the exhibits.  We don't leave until after the light show on the esplanade. It is amazing and memory making.

 

I love the Little Hands On The Farm exhibit.  Grace took her very first steps there in 2010. That was before her adoption was consummated so we couldn't post pictures yet. I think those picture CD's may be in the attic. Here are the last two years. Man she is growing up fast.

 

2012

Oct 2013

 

Oct 2014

 

We love to ride on the Texas Star Ferris Wheel! It is amazing with all her sensory issues that she can tolerate this. Every year she wants to go and then changes her mind. This year she joined me and Cowpoke!

 

And the required State Fair Picture with Big Tex. At this point she was getting really tired and her legs were getting heavy from her braces.

 

 

We have been enjoying the beautiful fall weather. 827 took this picture of her as she was picking flowers while he was grilling out.

 

We have a precious friend in town who is a huge supporter of foster/adoption and who has followed Miss Grace from her birth. She knows about all her food issues and she knows about her love of popcicles. She blessed our socks off with a huge supply of safe popcicles for our girl and Cowpoke!

 

We also had a fall rodeo and carnival at our therapy center. Right as it started there was a huge deluge of rain. Crazy rain, blinding rain, soaking rain, knock over the petting zoo and let the animals escape rain.  It ended up being a fun evening inspite of the rain, but Miss Grace was overwhelmed by all the people inside and she wasn't thrilled that the face painter couldn't paint a "real Elsa."

 

I have been struggling as we found out that she has to go back into her full AFO braces (up to her knees). Her ankles are weak and she is rolling them a lot. She doesn't get the ankle support she needs in her shorter braces. The hope and prayer is that after a few rounds of botox injections that she will be able to go back to SMO's. Pray that with me please. She has an awesome new orthodist and we didn't have a single meltdown during the casting. At our old orthodist it took me and 827 and usually a PT tech to hold her down. As you can see she sat there on her own.  I just struggle because kindergarten is coming and kids are mean. She has so many challenges and things that make her different and stand out that I really did not want these too . . . .

 

 

Leaving you with some super smiles!

 

 

And Gator Dog snuggles!

 

PS. Pray for Gator Dog too . . . he is going to go do some additional training in November to make the school feel more comfortable with him going to kindergarten without me or 827. We have already begun talking with Grace and she is insistent that he isn't going anywhere. It will be a hard separation for both of them but we really need and want the school district approval and are willing to ride out this time it that is what it means.

 





 

World Cerebral Palsy Day

Today is world cerebral palsy awareness day.  Grace currently carries the diagnosis of spastic diplegia cerebral palsy.  We are doing some genetic testing and that may change to a congenital paraplegia diagnosis, but for now we are supporting awareness and advocacy and research for cerebral palsy.   It is kind of ironic for us as yesterday we found out that because Miss. Grace's left leg is drawing back up we have to put her back in her SMO's (the shorter leg braces) and actually order new ones as she has grown. We are praying that this is just until she starts her Botox injections in January, but honestly we don't know. Pray for my little fashionista as she is not thrilled with this change of plans. If you wore green for Grace tomorrow please post a picture on our Grace & Gator facebook page. It's school picture day for Grace so we wore green in the morning and then changed for pictures.

Take me out to the ballgame!

 

Variety, the Children's Charity of Texas, had a special evening at Globe Life Park for some super special kiddos!  Variety is an organization near and dear to our hearts as they helped us to fund Gator.  Anytime they ask us to show us with Miss Grace and Gator for PR purposes I am all about that.  We are forever indebted to Variety and their generous donors. I don't think people truly understand how much life has changed for the better with Gator, but I will write more on that later.

We spent the first hour in the Kids Zone!  It was Grace's first time to a professional baseball game and she enjoyed getting to play and climb in there. 

Every staff member we encountered at the ballpark was incredible as they truly wanted to make sure all of us had the best experience ever! Every time I turned around someone was bringing Gator ice and cold water for his bowl. They sent a team member around with Miss Grace to allow her to experience all the Kids Zone activities and let me just be a Mom and interact with all the kids. Grace wanted to go down the big bat slide like she saw all the other kids doing. After several times of changing her mind she went down - just the once - but she did it and I was so proud of her!

After the Kids Zone we had to take some pictures and then we headed to our seats. We were seated behind three older gentlemen who were season ticket holders. They were super sweet in talking to Grace and listening to her endless commentary - "Where is the football team?" "When is the Indian Band coming?" "Where is the helmet?" (the inflatable helmet the high school football players run through) "Why is that man not hitting the ball?" "Why, why, why . . ."

I was THANKFUL that our older daughter was able to come help tonight when 827 was not able to get off of work.  She was a huge help. She was amazed at how protective Gator was. Gator is not trained to smell peanuts, just dairy and soy, although peanuts are on the banned food list.  The older gentleman in front of us was eating peanuts and it was like Gator knew that they could hurt Grace and he was standing between her and the gentleman until he put the bag away. It is amazing all he just knows to do. I am amazed my him every day and blessed to have him as my "6th child."

So now what I am getting messages about . . . why is she in the wheelchair?  Back in April our muscular neurologist that treats Grace's spastic diplegia cerebral palsy told us that when she has growth spurt we are going to see some increased issues with her muscles.  As she gets bigger the problems are going to increase. As a Mom that is hard for me because I see other kids with the same diagnosis that are far lower functioning than my baby girl and I think how can they have the same diagnosis?  In the spring our neurologist suggested that we order a special "assistant propelled wheelchair" aka "big kid stroller" for Grace.  Distances are hard for her and her muscles are much more fatigued in the evening. She is only 33lbs but she is 40.5 inches tall and she is growing fast. Her size makes her difficult for me to carry her long distances and she is to tall for our beloved BOB stroller. Her head touches the top of the canopy and that causes a whole gamut of sensory issues. So after much discussion we ordered her chair. She won't need it everyday and she can walk. We want her to walk as much as possible.

Socially she has become more fashion forward and she knows that her friends at school and church are not wearing the leg braces. We had a huge power struggle at the end of the school year and after talking to the physical therapists we decided to let her come out of those braces and work her muscles hard this summer. We have done that but she is growing and her muscles are changing. Her hips and knees are doing a lot better (Thank you swimming and water therapy!) but her knees down are just struggling. While we await her genetic testing we are going to start quarterly botox injections in her legs and feet to help these muscles.  She doesn't want to wear "magic shoes" anymore and she participated in the discussion with the neurologist yesterday and understood it was magic shoes or shots. Neither of these solutions are short term. She chose injections and so we wait for insurance approval. But while we wait for that he wants us being really careful with distance and her foot that drags. We don't need her falling and breaking her arm or wrist. So the deal was we get our chair and we wait for approval to start injections. Except that our chair is still on order. We have been expecting it for the last month but it still isn't here. The dealer brought this sample for us to use tonight as we knew it would be a lot until ours is here. Grace is going to be sorely disappointed as hers does not have all the upgrades - light up wheels and sound machine that this one did. It was a huge help tonight and she could roll and wheel that thing everywhere. In fact when it came time to leave she did not want to go and kept trying to wheel her chair away from us and then when I took over control from the back she was throwing on the brakes. Little stinker!  So now we wait for our pink one to come in any time now.

The Reader's Digest Version Update

I know I say every time I am going to do better about this whole blogging thing and I really do intend to, but you know, life happens? I am sorry. I really will try to do better. I have a lot to cover so we will just hit it in bullet points with lots of pictures of Grace & Gator.

• We got discharged from pulmonology rotation! We love our pulmonologist but we all agree that Miss Grace has flares of asthma and sleeping issues because of EoE flares and seasonal allergies. We can treat that at home with guidance from our pediatrician and developmental pediatrician.  Unfortunately the ragweed in Texas is making Miss Grace's asthma a little haywire but we are dealing with that at home!

• We had another pediatric GI appointment with our fabulous EoE specialist.  While I thought all the awful side effects she was experiencing were from the swallowed steroid it turns out it was the Splenda that the steroid is mixed in and swallowed! Miss Grace can add artificial sweeteners to her list of banned foods. We got her on to mixing with blue agave nectar and our life has been so much better lately! Thank you, Jesus!

 

• We survived her 6 month check up at the dentist. We had been told that if they were unable to get x-rays and clean she would have to be scheduled to do it under anesthesia.  She wouldn't do x-rays or a full cleaning, but they were able to do fluoride really quick and they said we could wait 6 more months.  As you can see Gator Dog was not so sure what they were doing to his girl.  I love how protective he is of her.

 

• Our geneticist is running more tests. We were hoping to get discharged but that didn't happen. She is working with our neurologist to investigate some other things.  The good thing is that insurance quickly preapproved the really expensive tests that now we wait 6-8 months for results on. She has not met a dog she doesn't like - real or fake!

 

• My precious friend and bridesmaid in my wedding found Miss Grace the much longed for Queen Elsa dress. She went though about a week where she would answer to nothing but Queen Elsa. Everyone who knows her in person knows that she LOVES to dress up and she has been over the moon excited with her gorgeous dress.  She will gladly serenade you with "Let It Go" upon request.

 

• SCHOOL! We started school. She goes to school from a full morning of therapy so she is tired.  We go straight to lunch.  Things at her school have changed as it is no longer an early childhood only campus.  There have been some adjustments and some sensory issues to work on.  She is doing better and got treasure box two Friday's in a row! It is all about the baby steps. She goes to pre-k for an hour and spends 2 hours in the 4 year old preschool class.

 

 

• She continues to love therapy! We spend 4 mornings a week in therapy and I am thankful for our therapy team. We are going to be so sad when the outdoor pool closes the end of this month and water therapy comes to an end.  We are going to pursue some other options for use of an indoor pool so pray I can work those connections.  The neurologist at her appointment today said he could tell how much being in the pool had helped her legs the last 4 months. We have some decisions to make on treatment of her legs going forward. I will share more on that in the future. Just pray for 827 and I to make the best decision for her care - either decision will be a lifetime treatment and both carry a hefty price tag. 

 

 

 

• Here is a cute picture to leave you with.  Tomorrow she has an exciting evening ahead of her so please stay turned. I won't wait another month to blog it!