Tuesday, September 27, 2011
This fall has brought about a big change in our household. Noah has started pre-K three mornings a week. Andy goes two mornings a week, meaning each Wednesday is just a Mama and Andy day. Each Wednesday we go to storytime, then we come home and Andy plays and plays and plays. There is such a difference in his personality. He seems much more independent and has a ton of confidence in himself. He really loves driving McQueen around the yard with his Super Why cape on:) That cape has made many trips to HEB and Target! He is such a fun almost three year old!
Saturday, September 24, 2011
Thursday, September 22, 2011
Thursday, September 15, 2011
Tuesday, September 13, 2011
It was my freshman year in high school, spring semester. The year was 1995. My sister was a senior and was driving me to school. I thought I was so cool! I played the alto saxophone that fall in the marching band and had started playing the baritone saxophone that spring for the concert season. I tried out for Softball and made the high school team. I worked it out with the band directors and the Softball coach to do both. I was seriously on top of the world! I was so excited to be able to do the TWO things I loved the most. One night during a softball game my parents came to the dugout. They asked me if I was okay. I said I was alright, but I felt like I was running in slow motion between the bases. Both my Mom and Dad said, "Amy, you WERE running in slow motion!" I will never forget how sluggish and gross I felt. The following day I stayed home from school sick. My Mom made me a doctor's appointment with our pediatrician, Dr Rahman. (Oh how I miss her! She was also our boys doctor before we moved!) I had a killer sore throat. I was spraying my throat with chloraseptic, which is something I do not like at all. She did some blood work and said I had mono. BLECH. I had not even had my first kiss and here I had the "kissing disease." Thank you softball and probably drinking after someone!
Fast forward a couple of weeks. I had been told I should start feeling better, but I did not AT ALL. I was still so lethargic and was starting to drop weight like crazy. I remember very vividly, I started off weighing 147 pounds. Within just a couple of weeks I weighed about 120. My sister knew my clothes were falling off, and I will never forget she went and surprised me with a new outfit. I still have it. A mauve colored shirt and an elastic waist a-line knee length skirt that was sage green with little mauve flowers on it. I was starting to have horrible stomach cramps. Through Kristin's transplant team my Mom got in touch with the head of pediatric gastroenterology at Texas Children's, Dr. Klish. I started seeing him. At this point I was still losing weight very rapidly. He put me on a feeding tube (NG tube) which is inserted in your nose and goes into your stomach. Through that they pumped in Ensure. I was hospitalized and they started running tests. At this point I had been eating very little and now my only nutrition was Ensure. With the occassional cherry limeade slush with a good friend! All blood tests for Celiac Disease and anything else they could test for came back negative. But I was showing signs of severe arthritis in all joints, my feet were quickly shrinking in size, I shrunk an inch in overall height and was losing my hair at an alarming rate. I could not concentrate. My memory was very poor and all I wanted to do was still sleep. After testing me for osteoporosis, they said I was losing bone mass too. At this point it had been months, with two separate feeding tubes. I was out of school at this point, being homeschooled by a really neat lady the school district sent to my house. Desperately wanting to stay in touch with friends and really feeling sad.
School pictures were quickly approaching, so after a talk with Dr Klish we scheduled the removal of the second feeding tube for the morning of pictures. I vaguely remember my Mom helping me wash my hair that morning, then my Dad taking me to school for pictures. At that point I realized how important it was to be around friends. I had my freshman class picture taken, then headed right back to the medical center to have my third feeding tube put in. We then decided I should maybe try to go to school half days. The fall semester came around and I was still not feeling well. A lot of this is hazy, because my memory did not ever really come back from the time I was so malnourished. Our band directors let me march, even though I could not make it to all practices, games etc. The posters, cards, and calls from all the band members just truly made every day amazing. I marched in every single game. I was homeschooled, but would occasionally try to do half days at school (which usually included band!) as often as I had energy. A lot of that time I had a feeding tube. It was so hard to be seen with it. It was a very vain feeling, but a lot of people did not know what was going on. One kid asked me in Geometry "Are you dyslexic" I know he meant to ask "Are you anorexic" but as I sat munching on my counted out amount of jelly belly jelly beans trying to keep my caloric intake up on days I was unhooked from the feeding pump I am sure I was a sight. But to me, sitting in that classroom amongst the peers I had gone to school with since kindergarten was absolutely theraputic.
During this time I had multiple cat scans, mri's, radioactive isotope tests, six endoscopies, and one horrible test where I had to eat dry chicken and they put three long tubes down my throat that had sensors and I had to sit completely still for hours while they tracked the movement of my food. The only movie they had was Dumb and Dumber. Yikes! None of these tests showed the doctors anything. They ruled out cancer. They ruled out rheumatoid arthritis. They ruled out Celiac Disease. They ruled out Lupus. What was left?
At this point I was going on Tuesdays for weekly weight checks. Slowly the weight kept creeping down til I was about 90 pounds at 5 foot 7. At this point my heart started skipping beats and I had to wear a halter monitor. They called it tachycardia.
My doctor was amazing. I will always love Dr. Klish. Seeing him each week made me happy. My Mom would drive me to him and we would try anything we could to see if I could feel better. Then he threw up his hands and referred us to Mayo Clinic in Rochester Minnesota.
In the next couple of years I went to Mayo Clinic a total of three times. This first time though was the most pivotal. We got to town and checked in at the Ronald McDonald house. The next morning we were scheduled for an appointment. We arrived with all of my boxes of medical records. A team of doctors sat down with those records and began pouring through them. I was called back to see my doctor, Dr. Camilleri. He looked at us and said "She has Celiac Disease." We were shocked. I had been blood tested, stool tested, endescoped. How could I have Celiac? He said "I am pretty certain she has Celiac, but has been on a gluten free diet because of the feeding tubes, therefore her tests came out negative. I think she has another problem which is also masking the symptoms of the Celiac making it even harder to diagnose." WHAT?! So he started dictating in his little recorder then made me 10 or more appointments for the next week.
The tests were pretty wild. One was called a Sweat Test. I was covered from head to toe in a yellow/orange powder. They then put me in an "oven" and "baked" me for over an hour, trying to raise my temperature and get me to sweat. Anywhere that I did sweat would turn purple and they could see how my nervous system was working. I had one tiny ring of sweat around my navel and they aborted the test after over an hour. Another test was called a Radioactive Isotope study. They mixed radiactive isotopes with eggs and had me eat them. Then over the next couple of hours I would return and they would take pictures of my intestines. They learned from this that the eggs were still sitting inside my stomach after many hours of walking. Meaning my instestines were basically not working at all.
Towards the end of the week I had a diagnosis. First, I have Celiac Disease. We were given a small pamphlet on the gluten free diet and were told I needed to adhere to this for life. Second, we were told I had something that only one other person had a recorded diagnoses of... Selective Cholonergic Dysautonomia following accute infectious mononucleosis. Oh the mono, THANKS a lot! The other person to have this Selective Cholonergic Dysautonomia had also seen Dr. Camilleri after many years of problems. My diagnosis and theirs were nearly identical. Basically, the sweat glands, the gastroentestinal tract, and many other parts of the body fail to work. Here is the link for the published article from 1991.
After making many friendships from our week at Ronald McDonald we returned back to Texas. My Mom dove into a gluten free support group (without the help of the internet!) and all the books she could find. After many yucky pastas, cereals, etc she found a good knack at cooking gluten free! Within the next few months my stomach slowly felt better! Within the next few years, my problems from the Dysautonomia became better and after two more visits to Mayo Clinic my Senior year in high school I was back to feeling great! You can just say, the Celiac Disease diagnosis saved my life! It is now a huge blessing. With HEB having a gluten free aisle, General Mills having a gluten free facility to make chex, many restaurants having gluten free menus, a husband that does not mind having a gluten free home (saying he loves me more than food!) and many brands willingly labeling their foods as gluten free (for example Ore Ida!) life has become so easy and instead of Celiac being difficult it is just a way of life!
This morning I left the boys and headed for MOPS. I loved every second. Sometimes I have a hard time feeling like I fit in. A ton of the ladies are super cute, with adorable fun clothes, and funky jewelry and they all know each other because their husbands are in the residencies at our local hospital. BUT then I got to thinking.... we are ALL there for the same reason. We are stay at home Mom's...we have young children, we love God, and we want to find a bond, eat snacks, visit, talk about the bible and how to make home life easier, and do crafts! At that moment I relaxed a bit and hope to have made some more friends.
We had a really great lesson today, one that really stood out to me and I wanted to remember. One of the members read this blog post... click here to read it. I definitely plan on re-reading this over the next years as the boys grow older and our lives change. It just had so many great points!
Pick up today went great! Andy was so excited and so happy. Noah was too! We are very excited that Noah's soccer practices start tonight. Andy really wants to play too. He is not old enough until next year. I did get him a yellow pair of soccer socks though, so he can at least dress like big brother!
A few cute things... lately Noah has taken to calling Andy "And" It is just a cute little shortened nickname. Andy has continued to tell him, "Noah, my name is ANDY!" Noah said today "I know And, but I like giving you a nickname" Andy then replied "My name is not nickname, my name is Andy!" Funny!
The boys got sick over the weekend. My folks were in town yesterday, because we had all just returned from a trip to Ft Worth from one of my childhood friends weddings. I woke up and ran to the store so I could get our weekly shopping done without the kids, in case they did not start feeling better. While at Wally World I picked each boy out a pair of black skeleton pj's that glow in the dark. When Noah was laying down to nap he said "Mama, my bones are hurting!" I replied "I am sorry, do they have a tag on them?" Noah then said "No Mama, my real bones, like under my skin!" Then less than five minutes later I heard Andy yelling from the closet "My bones are glowing! My bones are glowing!" I can only imagine how strange those things would sound to someone listening in but not seeing their pj's! SO funny!
Tuesday, September 6, 2011
Magnify oh magnify
Magnify our God and Father
Magnify of magnify
It just makes my heart so happy to hear him singing about God!
Just now Noah was playing on the porch singing. I did not recognize the song. I asked him what it was and he said "It is one I learned today at that new school you took me too." Then he sang these words...
I will make you fishers of men
fishers of men
fishers of men
I will make you fishers of men
if you follow me
if you follow me
if you follow me
I will make you fishers of men
if you follow me
So neat! I love that he sang it today at school and is already singing it!
Such an exciting day!
Thursday, September 1, 2011
Josh has been hard at work getting our new house fixed up. He has tiled the bathrooms, kitchen, breakfast room, and laundry room. We have new wood floors in the living, master bedroom, and carpet in the boys rooms and upstairs. Dad, Josh, and I (and a friend) have painted every room in the house. We have almost finished putting in new baseboards. Crown molding comes soon. Josh and I painted the kitchen cabinets. We got new counter tops, dishwasher and a sink. We refaced the fireplace. We have a million and one other projects still going on, but NONE of them could have happened if it was not for Daddy's Little Helpers. They have their own measuring tapes (they call them measurements) that they bring to the hardware store along with us. Josh was measuring for the new back splash we were headed to buy for him to install and the boys starting measuring too. It is always good to double check the work!
Josh working on the board and batten a couple of weeks ago - more posts about that soon!
Noah "installing" baseboards. That day Josh was running around in a swimsuit and no shirt working, so so was Noah! I love the drink and apron sitting in the boys bathroom floor - ha!
Josh taping off the countertops getting ready to install the back splash! We were finally putting on the cabinet doors that day (YIPPEE!) and you can see the board and batten a little in the background. We LOVE how that turned out!
Ever since Andy could walk, he just does not slow down. He is one of those little boys that just goes goes goes. I love that about him, but also it makes Josh and I really miss those sweet baby cuddles. Andy is quickly nearly his third birthday (sniff, sniff) and he is still such a little guy, but is growing so quickly. I miss just holding him for hours. He has reached the age where missing a nap is okay, but it does mean he will be asleep for the night around 6:30-7. We do not miss naps often, but last weekend he did miss his nap. He was sitting on the couch with Josh watching a movie and just feel right to sleep. Josh was so happy, because cuddling Andy like this is so rare. Josh just laid back and enjoyed every moment of the cuddles. Which then sent me running for the camera, since I had not seen this sweet sight in so long!
Andy is just growing up way too fast. His favorite thing to yell is "Moses says LET MY PEOPLE GO!" and yells it in this hilarious little country boy voice. He loves singing "Five little ducks went out to play, over the hills and far away. One little duck went quack quack...." while playing his ukulele. He loves food, but does not eat much. He is moving into the 3T shirts, but still wears mainly 12 month shorts and some 18 month shorts. He can write the letter A and the letter H. He can count to 20 and almost always gets blue and red confused. He loves his brother, and loves pestering his brother equally. His favorite color is yellow. Everything needs to be yellow. He has a yellow room. Yellow silverware. Yellow bowl. And really wants yellow crocs for his birthday! We met his teacher this morning for his new MDO and he is really excited about his class. If he gets embarrassed (which sadly happens often) he either starts swinging like he is going to hit or spits. He is a little riot! Andy wants to do everything on his own. He does a great job with going potty and loves to swim (but not put his head under water!) He truly melts my heart and I cannot imagine not being with him every moment of every day! I love you Andy!!!
The boys really love the new Disney show Jake and the Neverland Pirates. They walk around all day singing "yoho let's go, jake and the neverland pirates!" We have been talking lots about pirates lately and what they looked for or kept in treasure chests. The boys each decided they needed treasure chests. I was so excited. We went to Hobby Lobby for all the supplies and picking them while singing about pirates was really cute:)
Painting and decorating the pirate chests was some serious work!
It was more fun watching the boys paint and you can tell from Andy's "moustache" a treat of fruit punch Gatorade was super exciting too!