Wednesday, May 30, 2012
Monday, May 28, 2012
One Day at a Time-Landon Update
I have been meaning to write a health update on Landon, but have been avoiding it due to lack of time and most importantly because when I write about it that requires me to think about it. I have been keeping myself constantly busy in order to not worry and let my mind wander. We had the appoinment with the liver doctor on May 2nd. We actually had 2 doctors and they were both wonderful. They spent over an hour and a half just asking questions, going over his medical history, and then thoroughly examining him. They also had a great bedside manner and were very good with explaining things and not freaking us out. They gave us just the right amount of information. They explained the possible scenarios with us and what steps we were going to take. First was more blood work to test for various liver conditions such as Wilson's Disease, Autoimmune Hepatitis, something similiar to emphysema, re-check his liver levels, muscle enzymes levels, etc. More stuff that I forgot as it was overwhelming. A few days later we had to do a 24 hour urine collection to test his copper levels and that next week we had to go back to TCH (West campus this time which is a little bit closer to us) to have a full abdominal ultrasound. The doctor himself actually called me a few days after our original appointment at the liver clinic just to let me know that he still hadn't received all of the results, but that his liver levels were still in fact high. He even told me that he was on a mission to get to the bottom of this. I just love the drive and determination that the specialists at TCH have! So, we went for our ultrasound that next Thursday at 8am and it was very thorough. The tech spent about 30-40 minutes and she checked out every single organ from every single angle. Once again all of the staff at TCH West Campus were amazing! I was not expecting to hear back from the doctor until that next week once he got the results from the urine test, blood work, and ultrasound. We were also scheduled for that next Wednesday to have more bloodwork and a liver biopsy on Thursday. We were freaking out about the liver biopsy as it's not an easy procedure for a 6 year old and has its risks. We would have to be at TCH at 6am and then once the procedure was over Landon would have to lie still on his side for 4 hours. Not fun! Not to mention the full blown anesthesia and the thought of a huge needle penetrating his side, trying to avoid the vessels and bleeding, to make its way to the liver for a sample. The liver doctors told us that the biopsy would hopefully give us some answers and would only be cancelled if the bloodwork showed his muscles to be the problem (which we were not expecting since it's rare). Well, that same day of Landon's ultrasound as I was with Emerson washing my hands in the public restroom at the child therapist office (for Landon) minutes before our scheduled 2pm session, my cell phone rings with a number that I didn't recognize. It was the liver doctor. Of course I knew it wasn't good for him to be calling me that soon, way earlier than expected or told to expect, and on my cell phone. While standing in the hallway corraling Emerson he proceeded to tell me that everything was perfect and normal with his liver and nothing unusual showed up. However, as they had mentioned to us at our appointment, it was an issue with his muscles instead and that there was a neuromuscular disease of some type going on. He told me his muscle enzymes were extremely high and that he only sees kids like him 1-2 times a year....that come to him for elevated liver enzymes, but it turns out to be the muscles. When I asked him how high he was talking about, he said they were around 15,000 and normal is 150 or less. I must of made some noise/sound of some type and he told me, "well, there are less severe types of muscular dystrophy" to ease my worries. Thank goodness I did my research prior because they never mentioned MD to me as in our appointment they just vaguely said "muscle related" and I looked it up when I got home and it pulled up MD. I wasn't worried at that point though. But in that moment on the phone with the liver doctor I was shocked as we didn't see it coming, honestly. He proceeded to tell me that we would no longer need to see him and that he was calling our pediatrician to get the referral process rolling as we needed to see a neurologist soon. Wow! Talk about shock! Part of me was relieved though that we could cancel the liver biopsy. Over the next few days I was in contact with our pediatrician and her nurse to get the appointment scheduled ASAP. When we were at the pediatrician's office for Emerson's 4 year well check that next week she told us that the head neurologist had already reviewed his files and wanted to see him "very soon". We spoke some more about the possibilities and his history and she even mentioned that Landon was giving her gray hair. He has had issues from birth that always brought us to the pediatrician and then on to many specialists. Now all of the pieces are coming together as all of his issues are probably all related. The nurse mentioned that one of the TCH clinics called Blue Bird Circle has a wait of 12-18 months and even our liver doctor mentioned waiting months up to a year. Seriously??? I was so relived when we got an appointment in 5 weeks, on June 27th at 10am. However, the worry set in when I saw that our appointment is actually at Blue Bird Circle and the Muscular Dystrophy Association Clinic with the head neurologist. That means we are in good hands and at the best place possible, but that worries me that we are going to that actual clinic and got in relatively fast. If the doctors are worried and have seemed to already diagnosed him with some type of MD, then I am really worried. There are about 30 different neuromuscular diseases that they diagnose and treat for at this clinic and there is a range of severity. From what I have read all of them have no cure, some are treatable, some progress, and some have a shortened life span. I literally pray over the list, praying for it to be one of the lesser diseases that we can manage and that won't effect his life span. However, my mind sometimes goes to a dark place and I start to panic and worry about all kinds of crazy things. It's especially been hard since Landon has been limping and complaining of leg pain again (these were always attributed to growing pains since they were inconsistent) the past 2 weeks on and off. He also has mouth sores again and we ended up in the emergency clinic 1 1/2 weeks ago as he had some nasty staph or fungus infection in his finger. Poor baby needed to have his hand numbed with about 5 shots (while he screamed bloody murder being held down) and then they had to get all of the nasty pus and junk out of it with a needle. Then he was on 10 days of bactrium to hopefully kick the infection. Seriously, he has been through enough. Poor guy is going to forever hate needles and doctors! And, we are probably just now starting. :( I spoke to a friend/co-worker whose 10 year old son has a neuromuscular disease that is one of the ones they will check Landon for. She is a great source of comfort as she knows what I am going through although her situation is a little bit different. It does scare me though hearing what her son has had to endure and the prognosis. His muscle enzymes also were not as high as Landon's. :( But, I am so blessed to have her as just one more person I can lean on. Throughout all of this I have been absolutely blown away by the support, love, and comfort that my friends have provided. It is unreal how blessed I am with all of my sweet friends. It brings me to tears to think about how fortunate I am to have them in my life as they have stuck right beside me through it all. So, the waiting game continues until June 27th. I am sure we have many more tests on the horizon to get to the bottom of this. That's all I want...to get answers and move forward doing what we have to do for Landon. I am tired of living in limbo not knowing what's going on inside of his little body. The main thing that is sustaining me is the thought of God's timing and planning. He knows what is going on and has his whole life planned out. It's not up to me! Worrying can change nothing so I have to leave it all up to Him. Letting go of that control and worry. Taking it one day at a time. We would appreciate any prayers and thoughts on Landon's behalf. I will post an update when I know something. Most of my updates I post on facebook first as it's easier and less time consuming.
Nasty finger. He never complained about it. I just happened to be washing playdough off of his hands at home after school and he screamed when I dried his hands. I just happened to see it out of the corner of my eye afterwards. Jason said he whined a little too the night before when bathing him but he never told us about it or showed it to us. I'm betting it's because he didn't want to have to go to the doctor.
Poor baby just got finished with his shots to numb his hand
This is how we found him one night. He decided to make his own bed on the floor instead
And the infamous rodeo pink pig took his place in bed
Lunch at school
Saturday, May 26, 2012
Thursday, May 24, 2012
Emerson at 4
Below are some things about Emerson at age 4 that I want to remember. She is still a silly, sassy, spunky, sweet, friendly, social, adventurous, and beautiful little girl. She hasn't changed much since she was a baby. She continues to fill our home with smiles, giggles, laughter, excitement, and never, ever a dull moment. We love her to pieces and know that she will continue to bless all those that she comes in contact with...let's hope that remains in the teenage years, Lord help us! :)
-At her 4 year well check she weighed 37 lbs (67 percentile) and was 3'5" tall (77 percentile). She passed her hearing and vision screening fine, but didn't care for the 4 shots. She kept asking if she was getting blood work (per Landon's suggestion as he thinks it's normal) and I told her "no". Well, when they brought in the tray of shots she asked if it was bloodwork and I told her they were vaccines. She looked at me like "okay" as we were laying her down and she cluelessly stared at the tray. Poor baby screamed like crazy once the first needle went in and did for a while. I felt so bad! Afterwards she asked why I held her down and that she was sad. :( She complained of leg pain most of the day and didn't participate much in gymnastics. Poor thing!
-She's creative, imaginative, and loves to pretend play
-Sensitive to others' feelings as she doesn't want anyone to be sad or to lose (when racing or playing a game she will always say "we can both win" or she will hold my hands as we race upstairs so we both get to the top at the same time)
-Emotional with movies/books when a person or animal is hurt or sad (she will tear up still)
-Whenever she answers your question wrong she will say "ask me again" so she can then answer it correctly (like on her birthday when I asked her how old she was)
-Loves school and is a social butterfly
-Really into jewelry, make-up (lip gloss, chapstick, eye shadow), and finger nail polish. She wants her finger nails and toe nails repainted daily and also asks me all the time when she can wear make-up like me (she thinks she can at age 6)
-Still stuffs multiple purses/bags full of her loot and lugs it with her EVERYWHERE. Now it's full of jewelry and make-up and she is very protective of her purse rarely letting it out of her sight and she definitely won't let anyone else hold it or even peek in it. She gets mad and will yank it away from you
-Loves bugs (lady bugs, butterflies, and rolly pollies) and animals immensly. Asks for a dog or cat as a pet every day and whenever she sees a dog she is obsessed with wanting to pet them. She seriously doesn't believe that an animal could harm her. Today while waiting at the bike rack at Landon's school she wouldn't stop asking me if she could pet a dog that was there with another mom. When I told her that we don't pet strange dogs she told me that no dog would hurt her or bite her even after I told her that I was bit by a dog when I was her age
-Has a great sense of humor and is pretty darn funny. She loves to make people laugh
-Is a people pleaser and a "brown noser" especially when Landon is in trouble. She will act extra sweet and say all the right things to look good
-She's our junk food junkie and lives off of cheese and carbs. The only fruit she eats is bananas and just about the only vegetable she will eat is green beans and sometimes potatoes. Way different from Landon who will eat anything and everything and just about every fruit and vegetable. She loves sweets especially candy and chocolate chip cookies. She has never drank milk a day in her life (besides baby formula) and only drinks water and sprite. She used to drink orange juice every morning but quit about a year ago and won't even drink apple juice anymore. At parties she turns down any type of juice and will ask for water. She seems to be becoming more picky
-Wakes up in the middle of the night a few times a month and comes to my bedside telling my she is scared. For a while she was doing it several times a week but stopped some once we left her closet light on and the door cracked open. She still comes downstairs but not as often. Most of the time I just pick her up and put her in bed with us as I'm half asleep, but I think after a few days she then expected to get to sleep with me so she used the being scared as an excuse. She's still a momma's girl and wants to sleep with me and asks to often
-Wants me to sit with her to watch movies or watch her play as she wants me right there with her all the time
-She's our cuddler as she likes to be held, touched, hugged, snuggled, etc. She asks me to hold her all the time still and wants me to lay down with her at naptime and bedtime. She's always been our snuggle bug from day 1.
-When playing outside she likes to ride her bike or scooter, collect rocks, bugs, and acorns, play with chalk and bubbles, and socialize with her friends
-Very independent with everything especially with getting dressed and helping out at home. But, it's all on her own terms!
-She's a fire cracker and busy body and still has to be watched all the time especially out in public as she still runs away and goes missing all the time. I can't tell you how many times I have lost her. Just yesterday she was left in our backyard for a while. She also is still a darter in parking lots and fights me to hold her hand. Makes me so nervous! She's just not fearful of much!
-Definitely a leader; she tells Landon how high to jump and he follows
-Chatty and our little social talker. Her teacher said she is very chatty at school even during chapel and at children's church when we are her teachers. We do have great and very precious conversations and she is hilarious with what comes out of her mouth. I wish I could remember them all, but it's constant.
-Likes stickers, art, coloring, and finally writing her name (or at least attempting to). She is left handed
-Still loves all of the Disney princesses and all of their toys, dolls, movies, etc. She likes to pretend to be them too and tells me all what they are suppose to do and how they are suppose to act. Her favorite princess changes often.
-Likes reading books even on her own now and while looking at the pictures (most of the time with a Disney princess book) she will narrate the entire story with expression and pretty good accuracy (could be that she has read them a million times!). She also likes Barbie books, all Eric Carle books, and the Pinkalicious series
-Loves watching the Leap Frog Letter Factory DVD and now knows pretty much all of her letters and most of their sounds. She also enjoys going through ABC flash cards at bedtime to practice the letters, sound, and corresponding picture and asks to do it every night
-Still has a thing for real babies and baby dolls. She definitely has that motherly instinct and it's so sweet to watch her in action
Her purse really does go with her everywhere!
Enjoying some chocolate!
The contents of her purse....yes, she stuffs them full to the brim and puts some random items in it.
Giving me a makeover. She put her sunglasses on me and then brushed my hair and put her play rollers in it
Yep, sleeps with her purse too!
With her best friends Blair and Anzley
Dressed up as her favorite character Pinkalicious for book character day at school
Helping Daddy with mulch. It didn't last but about 10 minutes and then she said she was tired
Dressing up Prince Charming with Barbie's boots
Feeding the ducks on our street
On her 4th birthday
At the doctor's office for her 4 year well check and shots
Pushing her baby doll around the house and of course carrying one of her new purses
Posing one morning before school
Showing off her blue tongue from the 2 pieces of cake that she ate at Jack Henry's birthday party
-At her 4 year well check she weighed 37 lbs (67 percentile) and was 3'5" tall (77 percentile). She passed her hearing and vision screening fine, but didn't care for the 4 shots. She kept asking if she was getting blood work (per Landon's suggestion as he thinks it's normal) and I told her "no". Well, when they brought in the tray of shots she asked if it was bloodwork and I told her they were vaccines. She looked at me like "okay" as we were laying her down and she cluelessly stared at the tray. Poor baby screamed like crazy once the first needle went in and did for a while. I felt so bad! Afterwards she asked why I held her down and that she was sad. :( She complained of leg pain most of the day and didn't participate much in gymnastics. Poor thing!
-She's creative, imaginative, and loves to pretend play
-Sensitive to others' feelings as she doesn't want anyone to be sad or to lose (when racing or playing a game she will always say "we can both win" or she will hold my hands as we race upstairs so we both get to the top at the same time)
-Emotional with movies/books when a person or animal is hurt or sad (she will tear up still)
-Whenever she answers your question wrong she will say "ask me again" so she can then answer it correctly (like on her birthday when I asked her how old she was)
-Loves school and is a social butterfly
-Really into jewelry, make-up (lip gloss, chapstick, eye shadow), and finger nail polish. She wants her finger nails and toe nails repainted daily and also asks me all the time when she can wear make-up like me (she thinks she can at age 6)
-Still stuffs multiple purses/bags full of her loot and lugs it with her EVERYWHERE. Now it's full of jewelry and make-up and she is very protective of her purse rarely letting it out of her sight and she definitely won't let anyone else hold it or even peek in it. She gets mad and will yank it away from you
-Loves bugs (lady bugs, butterflies, and rolly pollies) and animals immensly. Asks for a dog or cat as a pet every day and whenever she sees a dog she is obsessed with wanting to pet them. She seriously doesn't believe that an animal could harm her. Today while waiting at the bike rack at Landon's school she wouldn't stop asking me if she could pet a dog that was there with another mom. When I told her that we don't pet strange dogs she told me that no dog would hurt her or bite her even after I told her that I was bit by a dog when I was her age
-Has a great sense of humor and is pretty darn funny. She loves to make people laugh
-Is a people pleaser and a "brown noser" especially when Landon is in trouble. She will act extra sweet and say all the right things to look good
-She's our junk food junkie and lives off of cheese and carbs. The only fruit she eats is bananas and just about the only vegetable she will eat is green beans and sometimes potatoes. Way different from Landon who will eat anything and everything and just about every fruit and vegetable. She loves sweets especially candy and chocolate chip cookies. She has never drank milk a day in her life (besides baby formula) and only drinks water and sprite. She used to drink orange juice every morning but quit about a year ago and won't even drink apple juice anymore. At parties she turns down any type of juice and will ask for water. She seems to be becoming more picky
-Wakes up in the middle of the night a few times a month and comes to my bedside telling my she is scared. For a while she was doing it several times a week but stopped some once we left her closet light on and the door cracked open. She still comes downstairs but not as often. Most of the time I just pick her up and put her in bed with us as I'm half asleep, but I think after a few days she then expected to get to sleep with me so she used the being scared as an excuse. She's still a momma's girl and wants to sleep with me and asks to often
-Wants me to sit with her to watch movies or watch her play as she wants me right there with her all the time
-She's our cuddler as she likes to be held, touched, hugged, snuggled, etc. She asks me to hold her all the time still and wants me to lay down with her at naptime and bedtime. She's always been our snuggle bug from day 1.
-When playing outside she likes to ride her bike or scooter, collect rocks, bugs, and acorns, play with chalk and bubbles, and socialize with her friends
-Very independent with everything especially with getting dressed and helping out at home. But, it's all on her own terms!
-She's a fire cracker and busy body and still has to be watched all the time especially out in public as she still runs away and goes missing all the time. I can't tell you how many times I have lost her. Just yesterday she was left in our backyard for a while. She also is still a darter in parking lots and fights me to hold her hand. Makes me so nervous! She's just not fearful of much!
-Definitely a leader; she tells Landon how high to jump and he follows
-Chatty and our little social talker. Her teacher said she is very chatty at school even during chapel and at children's church when we are her teachers. We do have great and very precious conversations and she is hilarious with what comes out of her mouth. I wish I could remember them all, but it's constant.
-Likes stickers, art, coloring, and finally writing her name (or at least attempting to). She is left handed
-Still loves all of the Disney princesses and all of their toys, dolls, movies, etc. She likes to pretend to be them too and tells me all what they are suppose to do and how they are suppose to act. Her favorite princess changes often.
-Likes reading books even on her own now and while looking at the pictures (most of the time with a Disney princess book) she will narrate the entire story with expression and pretty good accuracy (could be that she has read them a million times!). She also likes Barbie books, all Eric Carle books, and the Pinkalicious series
-Loves watching the Leap Frog Letter Factory DVD and now knows pretty much all of her letters and most of their sounds. She also enjoys going through ABC flash cards at bedtime to practice the letters, sound, and corresponding picture and asks to do it every night
-Still has a thing for real babies and baby dolls. She definitely has that motherly instinct and it's so sweet to watch her in action
Tuesday, May 22, 2012
A Conversation With a 4 Year Old
I have been meaning to complete a "birthday questionnaire" with the kids each year around their birthday and never seem to remember until I saw it recently on pinterest. Here is my recent conversation with Emerson about what she is like at age 4. It was fun to do this and a giggled quite often at her responses and tone of voice as she answered me.
How old are you? 4
What makes you happy? smiley faces
What is your favorite animal? cat and dog
What is your favorite thing to eat? crackers and cheese (which she was eating at that moment)
What is your favorite thing to do? go have a party and eat crackers and cheese
What is your favorite tv show? Mickey Mouse
What are you really good at? writing my name (she actually has a harder time with this but she thinks she writes it just fine! No confidence issues at all!)
What is your favorite movie? Letter Factory and the princess movies (she then went on to list them all...Cinderella, Princess and the Frog, Beauty and the Beast)
What is your favorite color? purple and pink and blue
What is your favorite song? ABC song (she then went on to sing the whole song for me)
Who is your best friend? Blair and Anzley
What do you and Mommy do together? watch a movie
What do you and Daddy do together? do the butterfly thing (they planted/set up her butterfly terrarium yesterday that she got for her birthday
What is your favorite sport? helping Daddy with the butterfly thing and soccer (once I clarified what sports were)
Where is your favorite place to go? eat at the Mexican place (no surprise there!)
What is your favorite book? princesses
What do you want to be when you grow up? A Momma, not a Daddy. Landon is going to be a daddy and Momma and Daddy are turning into kids (she said this with no prompting at all. I was dying laughing! It also made me feel good that she wants to be a mom one day.)
How old are you? 4
What makes you happy? smiley faces
What is your favorite animal? cat and dog
What is your favorite thing to eat? crackers and cheese (which she was eating at that moment)
What is your favorite thing to do? go have a party and eat crackers and cheese
What is your favorite tv show? Mickey Mouse
What are you really good at? writing my name (she actually has a harder time with this but she thinks she writes it just fine! No confidence issues at all!)
What is your favorite movie? Letter Factory and the princess movies (she then went on to list them all...Cinderella, Princess and the Frog, Beauty and the Beast)
What is your favorite color? purple and pink and blue
What is your favorite song? ABC song (she then went on to sing the whole song for me)
Who is your best friend? Blair and Anzley
What do you and Mommy do together? watch a movie
What do you and Daddy do together? do the butterfly thing (they planted/set up her butterfly terrarium yesterday that she got for her birthday
What is your favorite sport? helping Daddy with the butterfly thing and soccer (once I clarified what sports were)
Where is your favorite place to go? eat at the Mexican place (no surprise there!)
What is your favorite book? princesses
What do you want to be when you grow up? A Momma, not a Daddy. Landon is going to be a daddy and Momma and Daddy are turning into kids (she said this with no prompting at all. I was dying laughing! It also made me feel good that she wants to be a mom one day.)
Monday, May 21, 2012
So Long, Fair Well....
Landon had his last ever t-ball game on Saturday morning, bright and early at 8am. If he plays next season it will now be coach pitch. Should be interesting as it takes much more work and talent then hitting a ball off of a tee. Landon played great at 2nd base for one inning and almost got a few outs. He definitely gets the game more and knows what to do. It's truly remarkable the improvements that these boys have made in only 1 short year, 3 seasons. They are totally different players. They went from all running around the field chasing and fighting over a ball on the ground not even knowing what base was where, never getting a single out, to actually playing a true game and getting 2-3 outs each inning. I've enjoyed watching them flourish! Although I am ready for some down time and no games/practice 2-3 times a week, I will miss my sweet friends tremendously. The boys are all good buddies and get along well and us parents enjoy each other too. I have made some true friends, most of which have been with us since the very beginning. Luckily, 2 of the players go to school with Landon and a few more will next year. We are already planning many summer get togethers starting with a party next weekend. I am sad though as depending on our decision as to what league to play in next season (fall or spring) we will not be able to keep all of the players together as one league doesn't allow the same team to play together again and another has different age cut-offs and some of our players are too young. So, for now we say so long to the end of another great season of baseball. Emerson says she wants to play too, so we shall see what comes of that! :)
Emerson showing off her shirt cheering for Landon. Instead of watching the game she prefers to socialize, hang out with Taylor (Ty's little sister), play with her junk shoved in whatever purse she chose for the day, and of course flirt and hang out with the boys after the game and sneak a snack.
Emerson's purse for the day, her new make-up "caboodle". At least it's clear so I can see her loot.
Emerson and Landon's favorite snack, Oreos
Ty, Landon, and Luke
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