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!

It is not despair

"Courage is the best defense that you have now." -Gandalf

"Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the LORD your God is with you wherever you go.” -Joshua 1:9

"Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand." -Isaiah 41:10

Being brave and having courage is not very easy right now. I haven't had much time to write out the things that have been going on in our family but it has been a fairly difficult year.

Ezra our sweet little guy has had lots of issues. We have struggled through FTT (failure to thrive), lip and tongue tie, hospital stay do to lack of nutrition and FTT, formula problems, RSV, Developmental Delays and a hospital stay to combat dehydration due to a stomach bug. We have been at the doctors office constantly. We have seen a GI and Neurologist. We have been evaluated by ECI (early childhood intervention) and receive services for PT (physical therapy), OT (occupational therapy) and SST (special skills therapy). When we are not keeping appointments we are checking on insurance, making endless calls to schedule this or that, working on the tasks set by all the therapists and trying to just make it through the day, oh and I have 3 other children.

It's been pretty rough. I get discouraged. I wonder and hope that Ezra will overcome these delays. I pray and beg that we would be past this already. I slip into that mental place where I blame myself and feel crushing guilt because surely there must be a cause for all of this and maybe if I figure it out we can get over it. I get frustrated and think I don't deserve this and I did so much right during my pregnancy and other people have 4  kids and don't have these issue, why me? My thoughts are sometimes very very dark. But I won't stray there in this blog (for those thoughts are trash) - I already did with a very good friend and the ladies of my missional community and they listened and encouraged and prayed and we brought it into the light - and I will continue to "demolish arguments and every pretension that sets itself up against the knowledge of God and take captive every thought to make it obedient to Christ."

The thing is it is easy to go to the dark places and easy to stay there but we don't have to. Jesus is the good news calls us into the light. The truth is God is worthy of my trust and I do not deserve anything (other than death - thank God that Jesus carried that which I deserved and died in my place). I have so much to thank God for and when I thank him I combat much of the darkness. He gives hope. He makes me brave enough to face the next day, the next hour, the next minute, the next breath.

Where we are now with Ezra is this: Ezra is 16 months old. He will sit for about 5 min on his own. He is getting stronger and has begun to army crawl. He is making progress in his oral development and is eating more food. He has started to babble a bit. But we need prayer. Ezra needs help, he needs healing. Ezra needs his therapies (which have been lacking) and this tired momma needs the Spirit of God inside me to see me through.

I place my hope in Jesus and to some that is folly and to some it would be easy to despair but in the words of J.R.R. Tolkien,

“Despair, or folly?' said Gandalf. 'It is not despair, for despair is only for those who see the end beyond all doubt. We do not. It is wisdom to recognize necessity, when all other courses have been weighed, though as folly it may appear to those who cling to false hope. Well, let folly be our cloak, a veil before the eyes of the Enemy!

'At least for a while,' said Elrond. 'The road must be trod, but it will be very hard. And neither strength nor wisdom will carry us far upon it. This quest may be attempted by the weak with as much hope as the strong.

Jesus is not false hope and in his strength I will walk forward facing the challenges Ezra has.

p.s. - can you tell I read LOTR in the last year?

p.s.s. - I can't figure out what I did to make the text appear in different sizes nor does anything I try fix it. So live with it. And my poor grammar.

p.s.s.s. - I think I fixed it. The way the text appears. My grammar can't be fixed. Like ever.