Dustin: Can't Wait To See Where The Lord Will Lead Him

I remember hearing people say "Every child is so different" all of the time. I also remember thinking they are kids how different can they possibly be? Wow. Just wow. Our first two babies were so easy and laid back. So 'go with the flow'. And then we had Dustin! 

   Dustin came out running and hasn't stopped yet! He is the biggest ball of energy that never ever seems to run out. He is constantly on the move! He thinks there is nothing better than his Daddy, he likes to be a 'big boy' with Dylan and Madi, he enjoys trying to be Tucker's boss and he loves snuggling with his Mommy. He can be quite the handful, but man can he be such a sweet sweet boy! He is the funniest little boy! He can make all of us laugh, no matter what our mood is. Just last week he "burped" (for lack of a better word) at the table and when I corrected him, without missing a beat, he said, "I didn't burp - my tummy did that!" It was SO hard not to laugh at him and to continue correcting him! Each night in December I have sat in his room at bed time and told him the story about "Jesus' Birthday". Yesterday at nap time I was walking out of his room and he said, "I not go to seep Mommy - you not tell me story bout Jesus." Melt. My. Heart. 

    Dustin was diagnosed with apraxia about a year ago. Apraxia is a motor planning disorder that affects his verbal, oral, fine motor and gross motor planning skills. He used to have a speech therapist, an occupational therapist and a developmental therapist come out to our house several times each week to work with him. When he turned 3, we lost that program and he was eligible for the county preschool program. He started "school" in November and goes all day 5 days a week. He loves it. Mommy had a little bit of a hard time adjusting to him being gone all day, but he sure has loved it. More than him loving it - his speech has grown immeasurably!

   I'm so blessed to be Dustin's Mommy and can't wait to watch him grow! I pray for Dustin each and every day and I just know that the Lord has great things in store for him! 

Mesmerized by this little snake he found!

One of my favorites of him!

Such a handsome boy!

Children are a heritage from the LORD, offspring a reward from him. Like arrows in the hands of a warrior are children born in one’s youth. Blessed is the man whose quiver is full of them. They will not be put to shame when they contend with their opponents in court. -Psalm 127:3-5

Madi Jo: Enjoying Our Child As She Becomes A Woman of God

   The difference in raising a girl and raising a boy is so incredible to me. Sure, boys wear you out but it's a physical exhaustion. I am so exhausted at the end of the day from chasing the boys up the stairs, around the house, through the parking lot, and climbing things. You name it and they have the energy to do it. Girls are exhausting in a different way. Madi has never needed to be chased anywhere. She is content staying still. However, her "sassiness" and her "girly attitude" are mentally draining sometimes! It just amazes me to look at how different boys and girls are. It shows how great our God is. He makes us  all so different yet enough alike that we need each other. Simply amazing.

    Our Madi is already 6 and it just shocks me how fast time has gone by. It really seems like it was just yesterday that I was holding a sweet little 8 pound baby girl. Now here we are 6 years and 40 pounds later! She is such a sweet girl. She loves to help with her brothers, she loves to draw and color, she couldn't enjoy her dolls anymore and her all time favorite thing to do is "teach". Every afternoon she comes home and arranges her playroom so that she can teach her "students" (dolls and stuffed animals...and baby brothers when they will allow it) - she teaches them to read - not forgetting to stop and correct Mr. Teddy because he was talking while she was trying to teach! wink! She reminds me a lot of myself when I was a little girl! Right now Madi is in gymnastics and cheerleading and seems to really enjoy them. She is really wanting to take piano lessons!

   Madi is beginning to show us a soft spot in her heart for the Lord. Just the other day her and Dustin were having a little argument and I asked her, "What does the Bible say about respect".

   She responds, "Show proper respect to everyone 1 Peter 2:17".

   "Right - so are you showing proper respect to your little bother?" I say.

   "No, mam", in a quiet I'm ashamed of myself voice with her head tucked down.  A few minutes later she comes to me and tells me that she was sorry she didn't show respect to Dustin and that she is so glad that she has God's word hidden in her heart.  "Next time I am going to think about 1 Peter 2:17 before I do something 'not so nice' to my brother." Yay! She's getting it!!!!

   I am so proud of Madi and I can't wait to see her grow in the Lord and watch her turn into a young lady! 

Madi and Mommy at kindergarten graduation!

Our little gymnast

Madi and Tucker!

Only be careful, and watch yourselves closely so that you do not forget the things your eyes have seen or let them fade from your heart as long as you live. Teach them to your children and to their children after them. -Deuteronomy 4:9

Dylan: A Sweet, Sweet Soul

    As our year comes to an end I have been thinking about everything that has gone on this year. There is so much, that it nearly seems impossible to believe that it all happened in just twelve short months.  It is so hard to believe that Christmas is only 10 days away and that 2012 is only 17 days away! 

    Thinking over the year and how much things have changed I started thinking about each one of my four kids. I thought it might be fun to devote a post to each child - just about how special they are to Scotty and I. How we truly cherish our children and recognize them as true blessings from the Lord.

  I was such a proud Momma yesterday....we were just driving down the road talking and something about Christmas came up. Dylan said, "Wanna know the coolest thing about Christmas?" So, of course I answer, "Yea, what's the coolest thing about Christmas?" He says, "Everybody decorates their house for Jesus' birthday because since He lives in our hearts He is at everyone's house!" So sweet. He sure has amazed me this year. He has done so well in school, he is loving every minute of karate and basketball and the most exciting news....he is so close to salvation. Scotty and I pray for our children's salvation every single day and Dylan is right there. I am so excited for when the day comes, but for now I'm enjoying watching what the Lord is doing in his heart. This year Dylan has really shown us his true heart. He has such a soft and tender heart. He has a true passion for serving others. He loves nothing more than being a big brother. Now, don't get me wrong - there is plenty of bickering and "sibling moments" at our house, but if either of his brothers or his sister need anything he goes above and beyond to be sure that their need is met. 

    Now, while Dylan is such an amazing little boy - he isn't such a "little" little boy. This year - at his 7 year check up - he was almost 5 foot tall!!! 4' 10" to be exact! He is already wearing a size 6 shoe. Really? He's only 7! I'm gonna be looking up at him before I know it! 

    We call Dylan our true country gentleman. He loves to hold doors for people, open doors for the ladies, drink sweet tea, ride four wheelers, work on trucks, and take his sweet little time in whatever he may be doing! He enjoys fixing things for Momma, hunting with his Daddy, fishing with his Poppy and riding four wheelers at his Papa's.

    I consider myself truly blessed to be his Mommy and can't wait to see what the Lord has in store for his future! 

Train up a child in the way he should go; even when he is old he will not depart from it. -Proverbs 22:6

Do Not Worry About Tomorrow, For Tomorrow Will Worry About Itself

   Over the past 15 months I have tried to be patient. I have tried to be courageous. I have tried to be open minded.  There have been times that I have been none of the above.

   Last Tuesday we went back to UNC in hopes of finding out biopsy results and blood work results. In hopes of answers. I have to say that I left there feeling pretty discouraged. I didn't know much more when I left than what I already knew before I arrived. I did know that the "bacteria" that caused all of this trouble in the first place was found every where in my sweet boy's body. Our pulmonary doc told us that the Pseudomonas Bacteria was found in every single biopsy, culture and test that they had done. He told us that he would like to continue on the IV antibiotics for 10-14 more days, but because of the 'not so great' location of his PICC line we had to remove the PICC line and pray that the 14 days that he had already received was sufficient. He also told us that we had to continue to wait on the PCD (Primary Ciliary Dyskinesia) Biopsy - that it could be back in a week or it could be back in a month. So the wait continues...yet again. 

    Over the end of the week and the weekend Tucker started with another fever, cough and runny nose. On Sunday, Scotty and I decided to stay home from church and keep him home all day. In hopes of rest preventing another hospital visit. Sunday was a relaxing day - a day we all needed. We went no where. We did nothing. We decided to have an easy dinner so we could squeeze in a family movie before bed time and gearing up for another busy school week. Here's the plan: Daddy runs to the store for dinner and Mommy gives baths. We have dinner then we get to cuddle up for a movie before bed! "Couldn't be more perfecter", in Madi's words.

    While I'm giving baths and Daddy was out buying dinner the phone rings. UNC Chapel Hill flashes across the caller ID. I think to myself, "Eh, don't think I'll answer it - I'm sure it's just a computer with another appointment reminder....Wait, we don't have an appointment there next week - maybe I should see who is calling." "Hello?", with a quick, snappy I don't have time right now voice. 

    "Mrs. Tucker?", I hear a shaky voice say on the other end of the phone.

   "This is Mrs. Jordan...Tucker's mom. Can I help you?", I say.

   "Yes, Mrs. Jordan. I'm very sorry for the confusion. This is Dr. Paulson with UNC peds pulmonary. I wanted to call and check on Tucker. How is he feeling today?"

   "Well, it's funny you should ask. He actually started with a fever on Thursday - just 2 days after we took him off of the antibiotics. He has a pretty nasty cough and a runny nose. I was planning to give you a call tomorrow and see what you think we should do about it." 

    "Mrs. Jordan, we are going to need your husband and yourself to come in one day this week if at all possible. I wanted to let you know that we got Tucker's ciliary biopsy results back. He is positive for PCD and we will need to see you this week to try to get things in place."

    "PCD - he, he does have PCD? Where do we go from here? What now? What exactly is PCD?", I said while trying my hardest to fight back tears.  All of these questions that I already knew answers to came pouring out of my mouth. I have researched PCD a lot. I knew that this genetic disorder was something that these doctors had strong suspicions of. However, I had that 'denial' if you will - that thought in my head saying, "There is no way that my baby boy has a rare progressive lung disease that will possibly cause him to have a lung transplant before he is 20." Nope, no way. Not my kid. 

    I cried. I thought to myself, "Why my kid, God?" I didn't sleep much last night - I was up researching PCD and reading other people's stories. ( http://www.pcdfoundation.org/) I prayed. I cried some more. Then it just hit me. Get over yourself. This isn't about you. It's about Tucker.  And, more than that, it's about getting through it and finding a way to glorify God in the midst of it. 

    A few weeks ago our Sunday School teacher preached the whole class on "not worrying about the small things" because God will provide if we honor Him. While I'm sitting in front of my computer in the middle of the night worrying about how we are going to take care of Tucker? How will we pay for all of the medical care he needs? How will our life be 'normal'? - the Lord placed what I had just heard in Sunday School a few weeks ago on my heart. Suddenly, I felt relieved to know that if I trust in Him, if I seek His kingdom then He will be faithful to provide everything we need.

  

But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. -Matthew 6:33-34

  

Crocodile Tears

   Today is exactly 15 months since we've been "looking for an answer" for Tucker.  Today, I got a phone call from a friend telling me that an old friend of ours just found out that his two year old daughter has leukemia.
   I would lie if I said it hasn't been a long 15 months. I would also be telling a story if I said it hasn't been a total emotional roller coaster. However, I have hung in there and been as strong as I know how (with lots and lots of help from my Creator). I have watched my baby boy go through some pretty nasty tests. I have seen him look at me with his eyes full of terror and questions. I have heard his blood curling screams when he is being stuck for the 15th time in one day. I have heard some pretty scary words like cancer and lung diseases. I have learned to take care of and properly work PICC lines, nebulizers and pulse ox machines. I know that my God is bigger and He is going to get me through it and I have tried my hardest to rest on that as much as I know how to. However, I'm still human, and sometimes when someone uses my baby boy's name and the word cancer in the same sentence my mind wanders and it gets the best of me.
   So, back to the phone call. This friend of mine calls to tell me about Addison (the little girl with cancer - whom I've never met).  Her daddy is someone that I went to high school with - I've seen him around a few times since we graduated, but know nothing about him or his family and have no contact with him at all. Somehow though, the news of his daughter being sick caused all of these emotions that I've had bottled up for 15 months come rushing out of me.  And, it finally happened. I cried. A lot. Big crocodile tears. Right there on the phone with her. I have "held it together" so long. I have tried to be strong in front of doctors and nurses. Friends and family. My kids. My parents. And, the real joke...God....like He doesn't know how much I hurt inside...how much I worry until I make myself physically sick.  I just lost it. 
    I think one thing that has bothered me the most lately is how I feel like the other children feel like just that. Other children. They are being tossed around and left out and "pushed to the side" while we have to deal with our "sick baby". Do they feel like Tucker gets all of the attention? Do I show them that I love them just the same as I love him? Do they have feelings of envy or hate towards Tucker because Mommy and Daddy are always busy with him? Are they jealous of him? These are all things that came rushing out of my mouth that I didn't even realize I was fighting inside.
     In my book, my "big kids" win the "unsung hero award" for the past 15 months and my "baby boy" wins the "super trooper award". However, I'm not sure that I have shown them exactly how "my book" reads. All afternoon I have prayed and asked God to show me how to reach each one of my children to show them and give them exactly what it is that they need. For Madi it may be "special time alone". Dylan might love a thank you note or an "I'm super proud of you for being the best big brother ever" note. Dustin may need an extra bed time story with a few extra kisses between pages. Either way, whatever it may be, I need to "read my book to my babies". I want them to know how thankful I am for each and every one of them.
   Just a few fun pictures from our most recent stay at UNC....a place that we can not say enough good things about. A place that we have been truly amazed with. A place that we will be forever thankful for....

Playing upstairs in the "playroom"

Time for a breathing treatment. He insisted on holding himself. Such a big boy!

Playing in his "crib"

Talking to his big brothers and sister! He missed them so much. Every time he heard the phone ring he would say, "Dustin? Sissy? Dylan?"

Coloring!

Relaxing

A short motorcycle ride "around the block"

    Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. ⁷ And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. -Phillipians 4:6-7
   

We Don't Plan To Make This A Tradition!

   It's been so long since I've blogged that I don't even know what to blog about or where to start!

   Think I'll start here.

   This year Tucker and I broke tradition. We didn't eat Thanksgiving at Gigi's. We didn't eat for a second time at Nanny and Papa's and we didn't eat for a third time at Papa Cash's. Instead, we spent the day in room 6C10. We don't plan to make this a tradition!

    The past ten days have been trying. They have been long and tough. Stressful. However, with God's mercy and grace we've made it and they are in our past. Woo-hoo! As most of you know Tucker was admitted into UNC Children's Hospital on Thursday November, 17th. He was a very sick little boy. Severe ear infection, dehydration, lethargic, low oxygen level, working hard to breath and lots and lots of wheezing. His normal symptoms...times ten. He was pitiful. Scary pitiful. I have to say at this point I have a whole new respect for "just an ear infection". While, the ear infection wasn't our only problem it was definitely a huge part of it.

   It all started a couple of weeks before. Tucker and Dylan both had ear infections. No biggie. In fact, nothing unusual at all. Almost seems like I can barely remember a time in the past seven years that someone in the house hasn't had an ear infection.   All three boys have ear tubes, so when they get an ear infection - it drains. I don't even have to go to the doctor. We have antibiotic ear drops on hand - we use them and the ear infection goes away. At least it's supposed to. For some reason, Dylan's drainage had stopped but, his ear was still sore so I decided to make him an appointment with the ENT. Well, Tucker's ear was still draining...a lot...despite the drops and I could tell that his ear was starting to be sensitive to the touch - so I took him with us to the ENT. Our ENT cultured Dylan's ears - cleaned them out and started him on oral antibiotics. Same for Tuck.  All was great...woo-hoo, just a couple of days and we will have 4 healthy ears again! 

    I have an amazing grandma. This means that my kids have an amazing great grandma. She often goes with me to doctor's appointments and what not. Just to help me out...and because I love her company!  After we left the ENT we took Dylan back to school and we came back to my house for peanut butter sandwiches. High class lunch! wink! We both started to notice Tucker not acting the same. We could tell he was working to breath a little more and he was just acting punky. He didn't want lunch - he didn't want to play - he just wanted to lay on the couch. Not normal for my little man. I just kept an eye on him and decided to hold off and see how he did. By about 4:00 I decided he needed to go to the pediatrician. We get there and his oxygen was low, he was wheezing, extremely lethargic...he was very sick, and it all happened in about 3 hours. We did 4 breathing treatments and antibiotic shots at the pediatricians office. She sent us home and told me to watch him close. If all went well to bring him back at 4 the next afternoon for his second round of shots. About 10 AM the next morning I decided he couldn't wait til 4:00 to be seen again. I took him back to the pediatrician around 10:00 and as soon as she walked in the door she saw him and said he needs to go to his pulmonary doctor. We packed up and headed to UNC. As soon as we got there the nurses took us straight in a room and got busy trying to get him to "wake up" some. We tried popsicles, lollipops, ice cubes...everything. He didn't want anything to do with any of it - he just laid there in his stroller looking pitiful. The doc came in and said he was admitting us and wanted an IV started as quick as possible. It took 5 tries to get his IV in. Poor guy. He was so pitiful that he barely even fought us. Not a great sign I heard one of the nurses mumble under her mask. It took almost 2 whole bags of IV fluids before they called him "normally hydrated" again. They got us settled in our room - did blood work and cultures of his really nasty looking ear. I have never seen an ear like this before. It was red, swollen, draining and you couldn't so much as blow on it without him screaming bloody murder. It was awful. He was so pitiful and all I could do was hold him. Nothing made it better. Upon being admitted I never dreamed we would be there for 9 days. We went through 6 IV's, numerous blood draws, ear exams, respiratory evaluations, broncoscopy, endoscopy, ciliary biopsy (the one I wrote about in a previous post - that I was dreading having to re-do), more blood work, a new set of ear tubes and a PICC Line placed in his right arm. This PICC line was placed so that he could come home on IV antibiotics and not have to stay in the hospital the whole time just for IV antibiotics. The ENT doc decided not to do a cat scan because he hated for him to be under that much radiation if it wasn't necessary. He said that the cat scan would tell us if the mastoid bone was infected - he said there was no need to do this because he already knew it was. That is what the antibiotics are treating - the infected bone.  It was heart breaking for mama - I hated seeing him so sick and so scared. Every time he saw a nurse about to walk in the room he would frantically reach for me to hold him and save him from whatever it was they were about to do to him. As the days went on he started feeling better and better. He started being our Tucker again. All of the nurses and doctor's fell in love with him. They would stop by just to say hello. They would tell him that he by far won the cutest patient of the year award. They nick named him "smiley" and "surfer boy".  They would bring him candy and juice, coloring books and stickers! They were so amazing to him...to us. It warmed my heart to see them love on him so much.

    We know that he had an usually large amount of a bacteria called pseudomonas. This is a common bacteria for ear infections in healthy children. However, it's not common to have large amounts of it that won't go away. It's also not common to also have it in your mouth, throat, lungs and possibly other places. Tucker does. We are still waiting on other biopsies to show if it is in his intestines, stomach or anywhere else. With all of that being said....while it's not common for a healthy child to have this type of bacteria all over like Tucker does, it is pretty common in children with cystic fibrosis and primary ciliary dyskinesia. Another symptom of PCD to add to our list. Eeek.

    While it was a long hard week - God brought us through it. There was lots of planning on where the kids could stay while Scotty worked or came to the hospital, lots of asking family and friends for favors, lots of trusting that the Lord would provide. And, He did. We came home yesterday afternoon and we were so glad to be pulling in our driveway. It was almost surreal. Almost like a dream. We may not have got to have Thanksgiving dinner with our family, but we were still so thankful for so many things that the Lord has blessed us with. 

I sought the Lord, and he answered me, and delivered me from all my fears. -Psalm 34:4

The Long Awaited Update....Tucker Scott

  It's been so long since I've posted an update on Tucker that I'm not even sure where I left off...and to be quite honest with you I don't have much "news". We still have no "answer", but, I'll give you what I've got! wink!

   Back on September 1st Tucker had a ciliary biopsy done. This was by far the most traumatic procedure we've been through. It was awful. The point in the biopsy is to collect cilia so that they can look at them through microscopes to see if they are working properly. If they aren't...then we have an answer. PCD. Primary Ciliary Dyskinesia. Not the answer we are hoping for, but....it's an answer. However, this answer would still leave us hanging. There is not much that can be done for this genetic disorder...other than treat the symptoms. Lots of pneumonia, ear infections, sinus infections, chronic cough and wheezing, etc. I will spare you the details of the biopsy....just know that it was not fun and not something I would put him through again. They didn't give him anything to calm him or put him to sleep....just made Scotty hold him down. Poor Tucker. Poor Daddy. Not only was the biopsy awful....it takes 8-12 weeks to get the results from the biopsy. Talk about God trying to teach somebody patience! 

    While we are patiently waiting on the results of his biopsy we are basically just maintaining. We did see the GI doctor and we saw an immunologist/allergist. The GI doctor told us that he is on all of the meds he can be on for reflux and there really isn't much more he can do for him. He checked for malabsorbtion,  celiac disease and a few other odd things I have never heard of. Needless to say they all came back fine! The allergist also did some blood work that has all come back fine so far. She ordered blood work to check and see if his white blood cells are producing the proper amount of bleach. Betcha didn't know that! Learn something new everyday....I know I sure have! So, basically your white blood cells have 2 jobs. 1. They eat any bacteria "floating" by. 2. They produce bleach to kill the bacteria. Sometimes people have issues with their white blood cells not creating enough bleach...or any bleach at all.  It just so happens to be our luck that the phlebotomist forgot to run the bleach test when she did the rest of the blood work. So, we have to go back to have this test done. She also did skin testing to check for allergies. He had this done back in January, but, she said that in young children it can often change. Wow. Did it change. He had 14 positive allergies. Dust mites, cockroaches (eww!), ragweed, mold, grass (borderline), dogs, cats, peanuts (borderline), pecans, milk, eggs, lamb (borderline), apples and strawberries.  As a mother of 4 I have been very blessed to not have to deal with any allergies (Dylan has an allergy to amoxicillin) but, no food or environmental allergies. Our allergist has told us that since Tucker isn't having any "reactions" to these things not to change anything. They could be false positives. Our pediatrician and lots of friends who have kids with allergies all say they have never heard of continuing to eat foods that you have a positive allergy to. We are a little confused as to what to do to say the least. 

    We have recently found out that when we did Tucker's ciliary biopsy they did not collect enough cilia to get an accurate reading. Guess what this means? Yes. He will have to do a repeat biopsy. And, we will have to wait another 8-12 weeks to get the results. As I said earlier...this biopsy was awful and not something I would put him through again. Now, here I am eating my words and facing this head on. Several other doctors would like to do a few more tests (that require him being put to sleep...again) that we have been hesitant to do. Scotty and I have finally told them (after lots of thought and prayer...not in that order) that they have one last shot. They can put him to sleep one last time....and get what they need "while the gettin' is good". We are currently waiting on a date for this last procedure. This procedure will include a repeat broncoscopy, an endoscopy, an infant lung function test, more blood work, the ciliary biopsy and possibly a test that is very similar to the PH Probe that he had done before. They told us to be prepared to stay at least one night possibly two. The last time he had the PH Probe and the broncoscopy he got very sick and we had to stay longer than we thought we would....I think they just want us to be prepared for what could happen.

   So, really...that's all I have for now...it seems like lots of information....but, in all reality it's pretty much...well, none. Please pray that Scotty and I continue to seek the Lord's will through this and that we can continue to have patience and do what is in Tucker's best interest. We really appreciate everyone's support .... in the past 14 months we have been to doctor's appointments, tests, procedures, research labs and more doctor's appointments...it's been long. It's been tiring. It's been frustrating. It's been possible because of all of the support from our friends and our family. So, really...thank you.

But you, Lord, are a compassionate and gracious God, slow to anger, abounding in love and faithfulness. -Psalm 86:15