Day 25

Well, today is day 25. I have the same sweet and sick redhead as on day 1. He is so very tough. I have been looking forward to today since last week. Our biopsies were promised by today, but I will get to those in a minute.

I haven’t blog updated in several days:

Friday- Mondays labs all came back clear.

Saturday- Ada got the stomach bug. (Because we didn’t have enough GI problems in our house.)

Sunday morning- Mama got the stomach bug…. Thankfully not as bad as Ada.

Sunday afternoon- JD was having his worst day yet and started a low grade fever. The doctor told is to meet him at his office. Praise Jesus for doctors who open their closed offices for sick kids. We were unsure if he also had the viral thing we did, the infection was worsening, or his sore and red throat was causing fever. The doctor decided to start him on strong antibiotics since he didn’t know the source of the fever. Blood work and stool cultures all clear again, but no biopsy results again.

Monday- Pretty typical day. No new labs. Izzy felt and looked icky, but no bug.

Today- JD is the same. Biopsy results are all normal. It is good. I am glad. I am beyond frustrated. My sweet boy has been sick for 25 days and we have no more definitive answers than we had 25 days ago. The only thing that is confirmed his his whole colon is inflamed and has pus. The doctor says that when medicine fails to diagnose the only thing he can do is go with what he knows and thinks. So, we are continuing the antibiotics and large doses of probiotics to treat for an infection. He says we should start seeing results hopefully anytime now. He said the antibiotics may show us improvement, but not completely because more than one course may be needed. He says if anything else is going on then we will know by eliminating infection as the cause if the antibiotics don’t work. Just to make things fun, I think Jesse has now started with the same little big that took hold of Ada and I a few days ago. At least stomach bugs are quick and to the point. He should be feeling better in a few hours.

Please pray that the medication will work and that it will work quickly. Please pray if something is being missed it will show itself sooner rather than later. Please pray for peace and patience as we wait to see improvement. Please pray for Jesse to feel better and not throw up any more bottles all over Mama. Pray that Jason and Izzy stay well from the stomach bug.

Thanks to everyone who has prayed and loved us over the last 25 days. Your encouragement has been so wonderful.

Thank you Jesus that you know exactly what is going on in our little man’s body and nothing is out of your reach, plan, or ability. Thank you that he is not any sicker than he is. Thank you that even in stress, frustration, questions, and sickness You are ever present, faithful, and comforter.

So here we are on day 25. We have the same sick boy, but as usual he is napping in a new corner! 😉

Parentlife: The 25/8 Job

I saw someone tweet the other day that they do something 25/8. I like that. I think parenting is a 25/8 job. I love my babies….please don’t see my comment as complaining. I would rather mommy them than anything else in this world, but it is constant and sometimes overwhelming. Someone is always fighting, crying, into mischief, sick, or hungry. Oh. My. Mercy. They. Are. Hungry. BUT they don’t like anything you offer them unless it is loaded with sugar. I live in a sea of toys (most if which are on my floor) and can quote every episode of Daniel Tiger. The phrases I most frequently use are “say your sorry”, “go to time out”, “come here and I will kiss your boo boo”, “get back in your bed”, “don’t hit your sister”, “don’t step on your brother”, “hold on I have to change this diaper first”, “it is almost dinner time”, and “Jason, you are coming home soon….right.” Four kids under the age of 7 is exhausting. It is rewarding. It is wonderful. It is tiring.

As I have mentioned before, JD has been very sick for a while now. We are quickly approaching a month. A sick child quadruples the 25/8 tasks. Praise the Lord his night time sickness seems to have disappeared and we are praying it stays gone forever! He is not a fan or Mama and Daddy being out of his sight. Totally understandable. He is also very bipolar. He ranges from laughing, crying, and angry with out skipping a beat in between. Surprisingly enough we are pretty caught up on things. I am so grateful for a husband who helps.

JD has had a tough tummy morning. The doctor called yesterday and said all the samples from Monday came back clear. We are now waiting to see what Wednesday’s samples, blood work, and biopsies show. 21 days if being sick is no fun for anyone….especially not a 2 year old. I am waiting better now. I am pretty sure it is due to prayers if so many sweet friends and family. It helps having Monday’s results. Those were getting harder to wait on because we knew they could come at anytime.

Ada woke up not feeling well. God bless VBS, but 180 kids running around in one place is like a germ pool. Ewwww! We are all feeling tired, stuffy, and generally icky. Hopefully whatever is going on with her will end as quickly as it has appeared. Anyone else with FBC VBS kids that are feeling bad? I would love to know what we are in for with this hoard of kids we have.

When Ada appeared in our room sick this morning, my poor husband asked if this is what life with 4 kids would always be like. Haha! It is funny, except it’s not. In a few years there will be less illness and more drama of other types. Parenting…. the 25/8 job. We all know what I mean.

In this season the best most awesome part as been the encouragement from The Lord. He is continually reminding me to trust, rest, and cast it all on Him. He is ever present. He is all knowing. He is good and in control. As a sweet friend texted me last night We will have answers in a few days, but “God already knows. He never had a plan B. Hallelujah!”

So today, we will be lazy. We will play and not leave the house. We all need it after a busy week and the weeks that led up to it. We will rest physically and spiritually.

Parenting is a 25/8 job. It is a challenge, but is a gift from God. Praise Him for being better than a 25/8 God. There is no numeral that could express His continual presence. Thank you Jesus!

Update on Little Man

It is past time for an update. First, thank you from the bottom of our hearts for the prayers. Second, thanks for checking on our precious baby boy. Lastly, thanks for all the offers of help. We have had more offers than we could ever begin to accept. Jason and I have felt so loved and encouraged by the way you guys have loved us!

On Monday, the GI specialist that we see in Charleston ordered several tests after seeing our sweet JD. We headed over to the lab for lots of samples. Then yesterday JD had an endoscopy and colonoscopy along with some blood work. He did soooooo good! He continues to impress his Mama! The doctor found that his whole colon is inflamed and full of pus. We already had assumed this was the case, but it is still hard to swallow. I am sure that he has been way more uncomfortable than he can express or than we sometimes realize. No wonder he doesn’t want to eat and his having such a hard time. He was a total champ yesterday and handled the procedure and being put to sleep very well. Aside from a minor topical reaction to the tubing or some sort of tape their were no glitches.

So, now we wait. We wait for the rest of Monday’s labs and all the cultures and biopsies from yesterday to come back. We do know that Monday’s parasite cultures were all clear. The doctor’s hunch is that it is N infection, but we will not know what the cause of the infection is until all the test results come in. We have a follow up appointment on Tuesday, but the doctor assured us that we would hear from him sooner if he gets any results.

I am not a good waiter. I am normally. Very patient person. Today, I am not feeling patient. I am feeling antsy and frustrated. I am also feeling hopeful and encouraged. It is a huge relief to know we are headed in a direction and have the tests behind us, but I am ready for those little bacteria in the lab to do their thing.

The HUGE praise is that JD had had several restful/great nights in a row. Sleep is good and welcomed and I am hopeful it is sticking around. He is also having his best day or this whole fiasco today! Hallelujah! Go JD and go God!

Last night, I think I hit a wall of exhaustion. I think all my relief resulted in the ending of my adrenaline. So anyone who saw my stress and sleepiness at VBS, I am sorry. We were waiting for our ride home and by 6:45 I was burnt toast. I was also a bit emotional about telling over and over again that his poor little colon is inflamed and pus filled. I just feel so terrible for him. I M feeling much better today.

Please keep him and us in your prayers. Also please keep praying for wisdom as his doctor decides on a treatment based in our lab results.

We are so thankful for you all!

Day 14, 1 hour and 41 minutes…

It is officially day 14. Almost an hour in to be exact. 14 days ago my poor baby boy started his worst bout of bowel issues to date. I had just sent out an update thanking some sweet friends of mine for their prayers over the last several months (some even up to a year). I was basking in growth. Inches, centimeters, pounds, ounces… they all count. Every fraction is exciting to me. JD has been struggling with his growth for quite a while now. My emotions have ranged from the blow off of.. “He’s just going to be petite like my side of the family.” to tears and pity parties.

For those of you who don’t know, last fall JD started showing some alarming signs of some tummy problems. He was having chronic diarrhea, painful stomach cramps, and slow growth. It lasted for several weeks, well, to be honest we don’t know exactly when it began officially. This is one of the downsides of not being a first time mom. You know, that mom who worries over every spit up, every dirty diaper, the one who frets over teething, and diaper rash. I am soooo not that mom anymore. I wasn’t really ever that mom to start with. I can be to lax about things I guess. Anyhow, JD had fussiness and upset stomach all the way back to early summer of last year, but we explained it away as teething, antibiotics, etc. Well, by fall, it was obvious something more was going on. We began to see a pediatric GI and he said that JD needed to go back to his dairy free diet and restricted many other foods as well. (I say back to dairy free, because when I nursed I was dairy free with him… we assumed like a lot of kids that he would out grow this dairy thing and for a while it seemed like he had…but I guess not.) After a month on this new diet, fiber, and a new medicine. He seemed to be improving. We went back for a follow-up and the doctor said all the blood work and BM samples were clear and since there was some improvement, JD was diagnosed with sever IBS and a dairy sensitivity. Things went well for a short period of time, but from October-December the poor guy had also had a constant ear infection. Our pediatrician and even the GI felt like tubes were a good plan…as did we. So in January, JD followed in his mama and daddy’s footsteps and got tubes. The pediatrician and the ENT were confident that the antibiotics may be causing the lingering GI issues and were sure this would help. (IBS patients have very sensitive tummies and the meds increase their problems often.) It didn’t seem to help at first, but then things improved. For once, things seemed relatively normal for him. We have continued on the diet and we had growth. Not weight gain, but height gain. I was doing a happy dance.

I think the update message did it.

Ok… I know it didn’t.

Now here I sit on day 14. For 14 days, my sweet oldest redhead has been having diarrhea and stomach cramps. It is worse at night and in the morning. For 7 nights he has been up vomiting and had an upset stomach, two other nights he was up with stomach cramps, and tonight he has been up with an upset stomach. We are praising the Lord for the couple of nights that we had a full nights sleep. He has been to the ER for fluids once and we are seeing a small weight loss. Bless his heart, he doesn’t want to eat a thing. Can you blame him? And often when I lay him down at night he tells me, “Mama, I don’t wanna do it in the trash can.” That is his way of saying he doesn’t want to be up throwing up I guess. We are trying some new reflux meds.

You would think that after 14 days of this mess he would look and act miserable. No. He is tough as nails. He is pretty easily frustrated and Izzy is frequently his main target, but he is running around like a mad man. He is smiling and playing. He is also pitching some epic fits and napping. (I kinda could get used to the napping.) He had not been napping for several months, but has slept everyday since the day before he got sick. His eyes have dark rings and at the worst of his sickness in the wee hours of the morning he is pale… very pale, but he is pretty good. It could be way worse. That is what I keep telling myself.

So my jest is this… on day 14 he is pretty good and his mama is a mess. I feel terrible for him. My heart breaks. I hate watching his belly hurt. I hate the tears that come with the phrase, “I have poo poo.” I hate seeing him refuse his food. I hate hearing his little scared voice on the monitor at night because he is sick again. I hate hearing him tell me, “I don’t like this.” at 3am. I hate every single moment of it. I hate it all. I wish that I could make it go away or take it on myself. (The no weight gain would actually be kinda nice… I am trying to lose weight. Kidding.. kinda.)

I also HATE waiting to see the GI. We go on Monday. It felt like an eternity, then it felt like it was just around the corner. Now, I am feeling like it is never coming… but it is also 1:20 am and I have changed two very icky diapers since beginning this blog. (How does this happen when he is barely eating?)

I don’t think I have ever blogged about this. Maybe I have and just don’t remember. It is no secret, but I haven’t been super out there with it all. I just wanted to ask you guys to pray for my sweet boy.

Pray for my baby boy’s tummy. Please pray for rest. Pray for his doctor to have wisdom on Monday morning. (Pray for me to not hurt anyone… I am soooo not happy to have waited a whole extra week to see them.) Pray for me to have peace. Pray for me to cast my worries and anxious thoughts to Jesus. That is hard for a mama..especially when you are tired in the middle of the night… but it is no excuse. I need to consciously and daily and hourly give it to Him. Pray for Jason and I to have wisdom. Pray for normalcy. Last week was Ada’s last week of school and I tried to keep it normal and special. The girls are a bit jealous of JD’s extra cuddles and attention. Pray that I can find balance. Between him being sick and caring for a 6 month old baby my days are busy and full. Oh, pray for cleaning angels… I could really use some. hahahahaha! Ok, fine, don’t pray for those, but do pray that I make the right priorities of my time management.

I will keep you posted on what we find out about this mysteriously mostly night time tummy trouble.

PS: My husband is amazing. Every night is up putting towels, sheets, and blankets in the washer. He is getting wet wash cloths and coming to mine and JD’s rescue. He has packed lunches, folded clothes, and done dishes. He has prayed. He has hugged. He has listened to my whining. He has snuggled with JD and fed Jesse many bottles. He has let me take naps. He has slept on the not so comfy couch so that I can be in our room in my own bed with JD. (One of us has to get some sleep and be up bright and early with the other 3.) He has even offered some night shifts, but we all know I would be awake and worried regardless. I love you Jas!!

It’s the little moments that melt my heart!

JD has been having a tough IBS week. He has been doing great for the last several months, but the last few days it has been diaper change galore around our house. My sweet little man has been a bit clingy around the house since he isn’t feeling well. Being one of 4, it is easy to be out off and I was feeling a bit guilty about that this afternoon. JD kept asking to be held, but I was making lunch and sippy cups. I was feeding the baby and trying to get dishes and laundry away. After getting Izzy in her room for quiet time and Jesse down for a nap, I decided to go spend some one on one time with JD. Have I ever mentioned how precious he is??? We had a long toddler talk about how Monk Monk’s tummy was sick. He often says this when his own tummy isn’t feeling well. Then my sweet boy told me this, “I miss you in my bed. I tend Tuffy Wolf is you. Mama Tuffy hug me in my bed. I have a Daddy in my bed too. He is great. He is my Tommy Tiger.” He went on to tell me that Ellie Elephant is crazy Izzy, Baby Lamb is Baby Jesse, and Ada is Bongo the Monkey. He also has “another boy…it’s a brother”…this unknown brother is a stuffed monkey as well. It melted my heart to know that each night he is pretending that his whole family is in his bed. It makes all those nights that we go in and find him snuggled up with his stuffed animals even sweeter. It makes the moments that I listen to him playing with his animals in his be d during the day that much more precious. Thank you Lord for my sweet family. Thank you for the loudness and the mess. Thank you for the chaos and frustration. Thank you for the sweet moments that I will remember for a life time. So, ladies and gentlemen I give you JD’s stuffed animal version of our family… The monkey he is holding is our mystery brother. Haha

Why I wear grey and care about #braintumorawarenessmonth…

It is May. May is Brain Tumor Awareness Month. I hate brain tumors. I mean I am pretty sure that no one likes them, but really… I hate them. So, this month I have been wearing my grey and putting some facts out there. I am no expert, but I am a good googler of facts.

Today, I wanted to share something different. Something more personal that a googled fact. Over the last 5 1/2 years, we have had the great joy of knowing Skyla. Many of you know her as well. Many of you don’t know her, but have heard us talk about her or request prayer for her. Skyla is a hero of faith and joy to me. Skyla has spent many years battling a brain tumor. Skyla is the reason that I wear grey in May.

So, ladies and gentlemen (who don’t already know her), meet Skyla.

This picture was taken at Camp last summer. Oh how I love that smile. It is rare to see Skyla with out that smile. Skyla is the oldest of 6 children. She is a college freshman. She is a wonderful friend. She is my sweet JD’s Puggles teacher. She is a member of our church’s choir. She is one of the strongest and toughest people I have ever met. The most important thing that Skyla is though is she is a follower of Jesus. Skyla has a joy and faith that is something to imitate. I have learned so much from this sweet 19-year-old. I dearly love and adore her. Last week, Skyla went to Duke to have a port placed for her to again begin treatments in a few weeks. Last night, her mom posted this status on Facebook:

“Alright prayer buddies, I’m calling on you all!

Skyla is headed back to Duke for an urgent MRI at the request of the neurosurgeon. It’s scheduled for Wednesday. Start praying now we can manage to get the insurance company to approve. We (one of the girls from Duke and myself) managed to polietly argue the need for last week’s appointments and surgery. She made it very clear future care (with payment) would need several signatures and review with approval from the (cough, cough) medical director. Pray we find her in a good mood with a compasionate heart tomorrow. Pray that new shunt settings are all that is needed to solve the problems. Pray for this family’s continued strength. Pray for the sisters… pray hard for them. ♥”

Will you join me in prayer? Will you please pray for this dear sister in the Lord? Praise the Lord, they have received partial insurance approval today. Please pray for full coverage of all needed visits and treatment! Please pray for Dr. Grant her neurosurgeon. Give him wisdom and clarity. Please pray.

Also, please pray for her amazing family.

Meet Ryan and Julie:

Pray that God will give them a supernatural peace. Pray that they have safe travels to and from NC. Please pray for wisdom. Pray for strength.

Meet the sisters:
Madison (or JD’s best friend):

Carley

Quin

Meet the brothers:
Jack and Luke

Please pray that God also grants these sweet siblings peace and strength.

This family is so very dear to my heart. I am so grateful that when we are away from our biological families that God graciously gives us His church as our family. These are our church cousins. Please put on something grey and use it as a reminder to pray for people battling with the journey that is life with a brain tumor, but specifically please join us in praying for Skyla and the rest of her crew.

Thank you friends!

Happy Birthday Ada!!!

My Ada,

Today, you are off at school as a SIX year old for the second time. My heart still can’t get over the school part, much less the six year old part. It is so hard to believe that six years has passed since we first met. I will never forget the moment that Dr. Holton laid you in my arms. It had been a very long night, followed by a very long day, but none of that mattered when I saw you. My heart felt a new kind of love that it had never before felt. You were so big. Clearly, yes, you were a baby, but you were 8 lbs and 4 oz. You screamed, boy did you scream. Daddy and I loved you the moment that we saw you.

Today, you are just as beautiful. You are just as special. You are just as important to us. You are now the oldest of four kids. You are the “Little Mama” in our house. You love the title bestowed on you by Daddy and love it even more when JD calls you by it. You are beyond helpful. You are so very bright and are a terrific student. You are a good friend to all and are always concerned about others. All of these traits are things that I adore about you.

A very important moment happened in your little life this year. You prayed to receive Jesus as your Savior. This was my next happiest moment as your Mama! I felt such joy when we talked about it. I love the heart that God has already begun to stir in you for the lost and the world. I cannot wait to see what He does in your life as you grow up and grow in Him.

Below are two very special pictures. The first one is our first family picture from the day you were born. It was taken by the Dr. who delivered you. The second is a picture we took on your sixth birthday on Sunday. Daddy and I love you!

We might be a bit sillier now, but we love you just the same!!!

I am so very proud to be your Mama!

HAPPY BIRTHDAY ADA!

Here are a few favorite pictures of you from the last year: