Wise Men

The Wise Men are back!

The boys wake up each morning way to early with way to much excitement to find out what the Wise Men have been up to during the night and what they will learn that day...this year the Wise Men are teaching us a name of Jesus every day (and yes they taught us this 2 or 3 years ago but Momma needs to recycle!):

 Letter from the Wise Men on December 1st asking the boys to join them on a journey to discover the names of Jesus. The also taught the boys that Jesus is Wonderful Counselor. They had the boys take turns doing an obstacle course blindfolded and then learned just as they had to trust the one giving them directions so the have to trust Jesus.

 Mighty God. We caught the Wise Men hanging out with the mightiest people they could think of - Lego Ninja and Lego super heroes - and pulling out the superhero costumes. They taught us Jesus is the mightiest of them all and is the only one who can truly save us.

 Everlasting Father. Wisemen had us playing Father/Son matching game. We learned Jesus is our everlasting Father.

 Prince of Peace. We found the Wise Men holding out the white flag and bringing peace to the pirates. Jesus is the only one who can bring peace between us and God. After we prayed I asked Asher what he was doing with the two pirates in his hand, he said, "these two are not having peace." And the two pirates proceeded to fight.

Alpha and Omega. The Wise Men used magnet letters and alphabet puzzles to teach the boys that Jesus is the first and last, the beginning and the end. They had us pray for the Oldest boy and the youngest boy - Asher prayed for all the boys.

Advent is the best! We can't wait to find out all the things the Wise Men will teach us and to celebrate every day the coming of our Lord Jesus!

P.S. - I'm still not on FaceBook, so if you comment I won't see it....

Updates

Well the journey with Ezra continues...

Not much has changed since the post "Nitty Gritty." 

We left ECI at the end of July. By the end of August Ezra started PT with a physical therapist here in Cypress. I am very grateful for our therapist but he is not a pediatric physical therapist and I really think Ezra would do better with a pediatric therapist however there is not one in our area accepting new patients right now (we are on some waiting lists) so we will be thankful for what he is receiving and pray for an opening with a pediatric therapist!

Ezra will finally start Speech and OT next week! He received a second set of evaluations on Tuesday and Wednesday this week and I am really excited to get his therapy going. For those who don't know after leaving ECI it took me until September to find a place to do Speech and OT for Ezra but after the therapy place and the pediatrician office could not work together and tell me the truth (they both lied to me more than once) I decided to fire them both. I found a new family doctor, rather than a pediatrician, and a new therapy place. 

Ezra's genetic testing results came in. There were 2 findings: 1. he has carrier status for a genetic condition but does not have the condition himself. 2. there was a variant of unknown significance (basically there is a variation in a gene that is known to cause a genetic condition but the variation Ezra has is not the variation that is known to cause the genetic condition - it is not known if the specific variation in Ezra's gene causes anything). We met with a geneticist and she does not think that Ezra has any known genetic conditions. The 2 findings in Ezra's genes are actually 2 findings that are also in my genes and I don't have the conditions so it is extremely unlikely that Ezra does. The geneticist does not think either of the 2 findings are the cause of Ezra's developmental delays. The geneticist recommended a renal ultrasound and echocardiogram based on the variant of unknown significance as that specific gene when changed/mutated can cause severe organ issues and while she does not think Ezra has any organ issues she thinks it worthwhile to get his organs checked out and cleared. We have taken care or the renal ultrasound and are waiting on the echocardiogram.

Ezra's nuerologist ordered an MRI and Ezra was scheduled for an MRI in November but due to his having a fever the day before we had to reschedule and it it now set for December 14. 

I will be relieved when we can get all the testing recommended done and out of the way. I am thankful that we have all his therapies going, PT, Speech and OT but I am hoping we can get pediatric PT soon and that we can find a better time for OT (only available time right now is on a Wednesday - when I have Shiloh and Asher - during Ezra's normal nap time - sounds like a recipe for disaster...). If you are going to pray (and I ask that you do) please pray for pediatric PT and a better OT time. And mostly for Ezra's full healing and catching up on his developmental milestones!

I'm taking a facebook break and Chad never checks facebook so unless you comment on the blog, by email or txt me I will not know you have commented and as nice as your thoughts are I won't see them. I am only sharing this on facebook as I know a lot of people get to the blog from there.

Sonshine MDO

We are trying a new thing this year: Sonshine MDO (Mother's Day Out)!

So far it is a big hit! Shiloh and Asher are loving going to "school" Tuesday and Thursday from 9-2, and I am loving that they are getting to do arts and crafts, science stuff, read, sing songs and most importantly be loved on and taught about Jesus.

I never really considered sending the boys to something like it partly due to the cost and mostly due to the fact that I love being home with the boys. I like to do all the fun stuff mentioned above but with Ezra in the mix, mostly all the therapy and work I need to do with him it was a huge struggle to do any of that stuff.

What pushed us into MDO was that I finally found a place to do Ezra's OT and Speech therapy but it is 30 minutes away and he will hopefully have back to back sessions, 2 hours worth of therapy, 2 times a week and thinking of taking Shiloh and Asher with me sent me into a panic. I knew of Sonshine MDO at Fairfield Baptist Church through a couple of friends so I emailed the director and asked if they had any openings (I was a little nervous as MDO was 1 week away from starting) and Jesus is so good there was 1 opening in the bridge class for Shiloh and a 3 year old had withdrawn that morning so there was 1 opening for Asher! Yay!

I'm praying that Wishing Well Pediatric Therapy can see Ezra on Tuesdays and Thursdays while Shiloh and Asher are at mother's day out. I am also praying that the insurance company will quickly approve the therapy (the evaluation was almost 3.5 weeks ago) and I know the forms where finally sent on Monday. Come on people Ezra needs his therapy!

Below are some fun pictures form the fun times at MDO!

 First Day of MDO

 Asher on the water side at Make Waves for Jesus Day

 Tasty popsicle in Asher's favorite color

 First trip down

 Big smile!

 Mom did you see my cannon ball?

 Super cool anatomy lesson. Can you figure out what type of shoes Shiloh wore to MDO? Also the lungs are bubble wrap and the boys will pop a bubble and say, "oh no dad's lung collapsed."

 Lego scarecrow at the Oil Ranch

 Asher on the pony

 First snow cone...

 I think Ezra enjoyed it!

 Mining for gemestones

 We didn't find any gemstones....I wasn't going to go buy them...

 Milking a cow

 Train ride

Human hamsters

Belated!!!!!

Happy Belated Birthday Jude and Shiloh!

August 26th was the big day: Jude turned 7 and Shiloh turned 5!

Hurricane Harvey decided to mess with Texas and we had to postpone our family birthday dinner. Every year during our birthday dinners for the boys we have a time for friends and family to share a Scripture verse, word of advice or prayer for the boys. So it may have been late but we still took time to celebrate and encourage our boys! Happy late birthday!

Jude,
happy birthday little dude! I am so proud of you and I love you so much. You have grown so much in the last year. You finished your first year of school and have started 1st grade this year. You are so smart. You think deeply - it is for good reason that your teachers last year acknowledged the character trait of inquisitiveness in you. Jude I pray that God would use your desire to know things to lead you to true wisdom and knowledge. Proverbs 9:10 tells us that “the fear of the Lord is the beginning of wisdom and the knowledge of the Holy one is understanding.” Jude our biggest need is to know God. To know God well, to know Him deeply, to know him truly, as He is revealed in His word. I pray that you would seek to know God. Jesus tells us that eternal life is found in knowing Him, “this is eternal life, that they may know You, the only true God, and Jesus Christ whom you have sent.” John 17:3. Jude I pray that you would have eternal life through faith in Jesus Christ and you would come to know God. Then you will have the greatest knowledge. I love you buddy. Happy Birthday!

Shiloh,

happy birthday little guy. I am so proud of you and I love you so much. You are 5 this year and I can't believe how big you are getting. You are a smart, sweet and hard working little guy. You are a great big brother and a good friend. You are easy going and easy to get along with. You are a little peacemaker, always trying to help others get along. Matthew 5:9 says, "blessed are the peacemakers for they will be called the children of God." Shiloh I pray that you would have peace with God through faith in Jesus and that you would help others to have peace with God too. I pray that you would know as a child of God how pleased he is with you and how he loves you. I love you too! Happy birthday!

to show He is powerful enough

Well after a school year of hardly any illness for the 3 big boys we have had one rough summer when it comes to being sick. Poor guys have had 3 stomach bugs.

The first bug was by far the worst bug we have ever experienced. The 4 little guys got it and Chad and I had faced extreme tiredness and that you dread getting sick so you kinda feel sick but aren't. It lasted 5-7 days and is the bug responsible for Ezra's dehydration and hospital stay. Jude, Shiloh and Asher all had it and they were barely able to stay hydrated enough to skip an IV. It was a very very horrible week.

The second bug we faced took down Chad, Asher and Jude. It is the bug responsible for the wedding debacle.

The third bug got all of us but to varying degrees with Asher getting it the worst. Poor Asher.

In all its been not fun.

After throwing up at the wedding Jude asked why God let us get sick. I didn't have a good answer because I was a little frustrated with God at the moment so instead of trying to answer I instead asked Jude why he thought God let us be sick again. Jude's answer was super great and just goes to show that God uses his little guys to teach us.

"I think God lets us be sick to show He is powerful enough to heal us." - Jude, age 6

 

I guess God wants us to see his healing power.

Here Come the Ring Bearers!

Y'all my boys are super dapper. It's true. I mean just look at them:

Twice this summer the boys have had the honor of ring bearer. Both weddings were for uncles. Both weddings took place on the beach and the boys wore grey and white in both weddings. You might say the weddings were similar - both even had a stand out moment of wow that never happens.

For example in the most recent wedding my brother Kris arrived on the beach via wave runner because he is awesome like that.

The standout moment in Colten and Ashley's wedding takes a bit more telling.

We drove to South Padre Island on Thursday, the day before the wedding. Everything went great (or to be expected at least - Chad missed the last Starbucks for 3 hours, I felt car sick, we stopped way to many times and the 6 hr drive took 8-9 hour). We ate chick-fil-a for dinner and let the kids play and then we finally made it to the house. We went to bed as we were tired, all 6 of us in a room with 2 beds and a pack n play. At about 3AM I woke to the delightful sound of Chad throwing up. Oh man, Chad's record went down (it had been about 12 or 13 years). Pretty terrible yet we thought maybe it was just bad food, you never know. So that morning I got the kids well away from Chad and we spent the day playing in the pool at the rent house. Jude swallowed some water and spit/threw it up. I was getting nervous. I mean we had a wedding that night and I did not need anyone else sick. Asher woke from his nap throwing up. It was terrible. At that point I had a sinking feeling it was a virus. We were hours from home and 2 out of 6 were sick. It seemed to be a short virus though. Chad was feeling better that afternoon (not great but better). We decided I would put Ezra to bed and Chad would stay at the house with Ezra and Asher while I went to the wedding taking 2 of the 3 ring bearers.

Jude, Shiloh and I got to the wedding. Took some pictures and then it was time. The boys walked down the isle looking so handsome and stood so nice in front of Justin, the best man. Charity and I were standing in the back commenting on the faces the boys were making and how they were drawing in the sand. About 5 minutes left and Jude started shifting his weight back and forth and making  a winning face. I thought he has tired. Charity and I smiled at him and gave him the thumbs up. He kept making the face and I held up a finger to signal just a minute and mouth almost done, smiling all the while. The minister was pronouncing them man and wife. Jude started heaving. Realization dawned on me. He was sick. He was going to throw up. Frantically I started waving my arms and point to the side, trying desperately to get Jude to see me and get him to get move. He didn't move. I started running trying to go behind the chairs and around to reach him. Justin saw me acting crazy and gave me a puzzled look. Then he glanced down and saw Jude. He tried to guide him to the side. The minster said "kiss the bride" and Jude threw up, projectile like, everywhere. Perfect timing. Sorry Colten and Ashely.

I have two pictures to share from Colten and Ashely's wedding. The first Jude is cropped out and you can decide if Shiloh's face is a result of Jude or the kiss. The second picture is from someone's phone and is not cropped. Fair warning don't look if you don't want to. You're Welcome.

The Nitty Gritty

In my last post I didn't actually give a good idea (for the few who are interested - if that is not you stop reading now!) of what we know,  what we don't know and what we are doing concerning Ezra.

What we do know:
-Ezra has gross motor delays (he is not sitting, crawling, standing or walking)
-Ezra has fine motor delays (not grasping things with fingers, etc.)
-Ezra has oral motor delays (his tongue moves front to back instead of side to side, etc.)
-Ezra is no longer FTT, failure to thrive, (5% in weight and 40% in height) and the failure to thrive was a result of breastfeeding issues (the tongue and lip tie prevented me from establishing my supply in the beginning and despite doing everything I read and learned from lactation consultants it could not be rectified)
-Ezra was released from the GI doctors care as he is growing well and there was nothing wrong with his internal workings (all the blood work and samples of stool and urine came back normal)


What we don't know:
-The cause of the delay's:  Dr. Jones, neurologist, has us completing genetic testing to see if that will uncover anything and give Ezra more time to overcome his delay's with therapy. The first round of genetic testing came back normal (it tested for missing or added DNA). A second round of testing is under way to see the DNA sequence is out of order we won't have results until October or November. Dr. Jones does not think that the lack of nutrition from the breastfeeding issues and FTT caused the delays but it probably did not help the delays. We see Dr. Jones again in September and depending on the progress Ezra has made with therapy will determine if we have CT's and further more invasive testing done.

What we are doing:
Therapy! Ezra is receiving Physical Therapy and Occupational Therapy. We receive services through ECI (early childhood intervention) and as much as I love his therapists and how much I want to like ECI I don't. ECI is not covered by Ezra's insurance and we have to pay out of pocket - it is ridiculously expensive. Yet I stuck with ECI because they were the quickest start to therapy and I could not for the life of me find a place that did pediatric therapy, was covered by his insurance, did not require and 40 min drive or actually had the therapists needed. However Ezra has not received PT in 12 weeks due to his therapist being on FMLA and the policies of ECI not allowing a part time or temporary worker, so I've started looking again for therapists and I actually found a place that has PT and OT that is 5 min away and they take his insurance, I'm waiting for the paperwork (insurance approval and doctor referral) to go through so we can get an evaluation and hopefully get the correct amount of therapy. I will be extremely sad to say good bye to Ezra's OT and PT as they are wonderful but the system stinks, cost too much and Ezra hasn't been getting what he needs.

What I  am not doing:
Living in regret. Regret is a big struggle for me right now. I could go on for quite a bit fleshing out all the things I regret in this walk with Ezra but really I'll just skip to the end and tell you what all my regrets boil down to: Trust - deep down it's a struggle to trust that God is in control, that he is good, that he loves me. While worshipping as a church we sang, "How he loves" and the line that got me and I keep singing to myself is "I don't have time to maintain these regrets when I think about the way, oh how he loves us, oh oh how he loves us, how he loves us all, how he loves" because really if I stop and consider the depth of God's love for me there is not room for me to regret so that's where I want to live is in his love!