Just Another Adventure

We are not only on an adventure, but my legs are sore from all of the ups and downs, lol.  Sometimes if doesn't feel like we are climbing hills, but instead mountains.  So my last post explained our continued concern with Macy's weight.  We were able to get into GI quickly, and saw them last week.  Our appointment was interesting, with all of us knowing that Macy is tiny, has tiny people on both sides of the family, and is just meant to be small.  However, she is super tiny.  Tinier than I was at her age, tinier than my mom was at the age, and any other small family members.  We also all know that Macy has numerous health conditions and has battled illnesses and surgeries for almost 11 years.  It's so hard to say that there is just one thing causing it.

So the plan when we left there last week was to continue nutritional drinks.  The dietician offered some other suggestions of similar drinks that would add more calories.  We still have to order them online, and they are still costly.  We are continuing with her eating plan of 3 snacks a day, and 3 meals a day.  She also started Macy on a medication that is supposed to increase her appetite.  We also headed to the lab for more blood tests.  We did all of those, and decided to focus on the next few days of Christmas, and put the medical stuff on the shelf for a few days.   

We had a wonderful Christmas!!!!  We did all of our very special traditions with the girls, and had the most magical night on Christmas Eve and magical morning Christmas morning.  We are truly blessed!  We spent a lot of time with family, and the kids absorbed every moment of all of the love and attention from everyone.  The day after Christmas we spent the afternoon visiting with some great friends, and just catching up.  It was a very enjoyable weekend!

So after all of the excitement of the holiday, it finally dawned on me to sit down and check on her lab results.  Riley has an online portal to check test results, upcoming appointments, etc.  That is when I knew it.  I knew what was aiding in making Macy so tiny.  I knew what it was that caused her be so slim, after eating very similar foods and similar amounts as McKenna does.  How is McKenna growing and Macy not?  Well, after seeing those results, doing some research of my own, and then touching base with the doctor's office first thing the next morning, we had some answers. 

Macy has Celiac Disease.  "Celiac disease is a serious genetic autoimmune disorder where the ingestion of gluten leads to damage in the small intestine. It affects 1 in 100 people."  Gluten is a mix of proteins found in wheat, as well as rye, barley, and oats.  It is serious, however treatable with diet.  It will definitely change our lives.  It is not something she will out grow.  She will live with this for her whole life.  The good news again is that it is treatable, and more and more gluten free products keep hitting the markets. 

The doctor called me herself to tell me the news.  The crazy part was that we were at McKenna's 7 year well-check, and I was able to tell our pediatrician the news right then as well.  He, as well as our GI doctor, said this explains a lot.  Some of the symptoms of Celiac Disease are diarrhea, fatigue, weight loss, bloating and anemia, and can lead to serious complications.  In children it can cause problems with growth and development as well.

When I spoke with our GI doctor, we set up a meeting the next day, so she could sit down with us to discuss it, as well as give us the opportunity to sit down with a dietician to discuss Macy's diet.  We were able to do that today. We talked about the effects on the body, the symptoms, and how very important it is for her to stick on the diet.  One "cheat" can cause the symptoms to return as well as the entire stomach lining to become inflamed.  We have decided as a family to transition into a gluten free home.  It will take a little time to transition since we kept some of the "gluten" products to finish them off for the rest of us.  Macy is strictly gluten free from now on.  As we were leaving the hospital, my phone rang.  It was our doctor.  She was able to access some old tests from the old system (Riley transitioned their medical documents this past year).  Macy was tested in 2012 and 2015 for Celiac and was negative.  So she developed it.  Crazy!

We headed to the store following our appointment.  Longest shopping experience ever!!!!!  It is definitely a really big life changer.  The food at home we can manage.....costly....but we can manage it.  The big challenge is going to be dinners out, as well as friend and family get togethers, and family holiday meals. Just like always, with each new diagnosis, Jeremy and I looked at each other and said "we can do this"!  We'll be just fine!

If anyone of you have experience with Celiac Disease, I would love your tips and ideas in order to make this doable for our family.  I hope in no time we'll be experts on this just like her other medical conditions. 

We truly hope this next year brings a little relaxation medically for our family, as well as some positive health changes for Macy.  Happy New Year everyone! 

Yay for Winter Break!

We are doing pretty good in VanVleet Land. I'll start with all of our blessings. It's almost Christmas, and we have been enjoying family time. We just had Christmas at the lake with my family, and it was SO MUCH FUN! My mom outdid herself this year, and planned a Murder Mystery as the family game. The whole family dressed their part! It was hilarious! We had elves, Mr. and Mrs. Claus, a Gingerbread Man, a nutcracker, a snowman, a little drummer boy, and reindeer. I had that moment where I looked around at our family, all of us dressed in costume, talking and acting like Christmas characters, and thought "we are one weird family". I love my family!

Macy has been taking horseback riding lessons since we got the okay from Dr. Superina's office, and she's loving it! She handles the horse pretty well, and is learning so much! I feel so proud watching her! I had no idea that we would all have to know so much about horses. It's our job to get her horse, Raisen, out each lesson. We brush her, get the saddle and pad, put on the saddle and pad, take her out to the arena, and get her bridle. None of us have been brave enough to attempt putting the bridle on her, so Macy's teacher does that for us. We have to go through a big process to put her away as well. We quickly realized that we all needed boots and old clothes when we go out there for lessons. We are a mess when we leave! It's so much fun!

McKenna is knee-deep in basketball season, and Jeremy is coaching. He is doing an amazing job with the kids, and they are all having a blast! This is the first basketball season for McKenna to be on an all girls team, and we switched leagues. We finally transferred her over to our school corporation league, since we previously played for a church league and they don't have a league this year. It's a much longer season running from November to March. We have a break for Christmas, so we are going to enjoy no practices and no games. Christmas break has officially started! The girls and I are off until January 3rd. Jeremy will officially be on vacation at 3:30 p.m. om Thursday the 22nd, and doesn't go back until January 3rd! Woohoo! We are looking forward to family time!!!! I've been asked a few times what we are planning on doing during this time off, and I have responded each time with "NOTHING"! Jammies days are in our future! We need this break!

Another question I often get is "How is Macy?" Lately, that is a question that I have to answer, "she's okay". I have been concerned since August about her weight gain. She is not gaining any weight. I've brought it to the attention of a few of her specialists, and the typical response is that the weight will come, that her body is focused on catching up in height right now, and the weight will come. It is true that she is growing in height. She is up to 4 feet, and is growing at the rate of 2" per year right now. That is a faster rate than most kids her age. Since we are seeing height growth, she appears to be stretching out, therefore looks much, much thinner. Thankfully she has not lost any weight, but she just isn't gaining any. The stares are awful! It's typically strangers, who stare, and I know they are thinking about how thin she looks. They are judging her, judging me, and have absolutely no idea what this little girl has been through, and how hard we focus on total health for her. They have no idea that I don't sleep at night worrying about her. They have no idea..... And it brings all my concerns to the surface when other people comment about her thinness. Just because I don't talk about our struggles, doesn't mean I am ignoring them. The struggles overwhelm me, and I have a clear focus just like always to help Macy be the healthiest she can be.

  Which leads me into our endocrinologist appointment last week. We tested her thyroid again. The strangest thing about this is that she has been living in a high range with her thyroid, which means it is slightly underactive. Looking at her, that makes no sense. We are not treating it since it is only slightly elevated. I felt a little crushed, I just want some answers. So our endo asked me about my concerns. Of course her weight was at the top of my list. After a long conversation about which specialist leads the management of weight, I explained that no one really does. All of them touch at the subject, but I truly feel I have no support in this area. She said GI should be handling this, and that she wants us to go back, and demand a plan. In GIs defense, they came into the game late. We didn't start back with them regularly until we decided it was time to fix her liver. We talked briefly about a time frame in which Macy actually seemed to be gaining. It was back a few years ago when we had her drinking an elemental drink as her nutritional drink. This elemental drink is Peptamen Junior. From the pharmacy, this is the drink that costs over $200 per case, that insurance refuses to cover. They refuse to cover it because she takes it orally. If she was receiving it in a G tube, they would cover it. Anyway, after drinking it for months, we stopped because it was costing us an arm and a leg, and our nutritionist thought we could give something else a shot. I think everyone also though the liver surgery would help her start to gain. So, we are giving the Peptamen a shot again. I have ordered two cases, and we are back on it twice a day. I want to give it a go again for 1 month at least and see if we get any results. We will also be seeing GI tomorrow!

 Please pray for some ideas! We head back to Chicago in January, and we are praying for good scans. We are praying for adequate blood flow through her "portal vein" and that Dr. Superina tells us that she can stop the Coumadin. Pray for all of these things!

Merry Christmas from our family to yours!!!!