in progress

In some ways, Noah and I live parallel lives. Ha! Ok, maybe not parallel. But with so much focus in our family on Noah's progress and development, I'm realizing and accepting that I'm more of a work in progress than my sweet little bear.

Spring was busy.

Everything has sort of come to a head in the past few weeks, and I've found myself pretty overwhelmed with, well, just life I guess. First off, Noah has had LOTS of therapy, twice a week, and will be evaluated by an OT tomorrow so we can start some occupational therapy as well. But its not the scheduled therapy that's been so exhausting, it's the all day, everyday, forcing him to sign for anything he desires. But I am happy to report... he's made awesome progress! By awesome, I have to say it is definitely a relative term... he is signing "more" and "open", but he is still grabbing my hands to make the signs and is too stubborn to sign them himself. One of his speech therapists Bobbi insists that he is smart enough, and totally knows what to do, but he is remaining in control of the situation by not signing himself and that I just need to be patient and he WILL sign by himself. It is frustrating because I know what he wants, so I will touch his elbows to make him do the sign, but he will just overgeneralize and sign "more" for everything. Or, he will just throw up his hands and run off because he's mad that we're forcing him to do the correct sign. But just the fact that he's trying the sign is huge.

But I can't help but think, okay, now let's move forward, more signs, more babbling... it is difficult to wait and know that he will do it on Noah's time. He needs a little pushing, but for the most part I am trying to remember that when he's ready, and I'm patient and consistent enough, he'll communicate. Some of Noah's team is trying to diagnose him with Sensory Processing Disorder. I'd go in to more detail of this proposed diagnosis, but

He's also making lots of eye contact with not just me, but others too. He is learning to play appropriately with blocks, Mr. Potato Head, and chasing games with Ella. Progress is slow, but it is still progress. I'm learning to rejoice at every success, no matter how small. I forget how behind his development is until we are around other kids his age. I used to compare him to Ella A LOT and what she did at what age, but I quickly realized how unfair and unrealistic that is, for so many reasons. Beckie recently reminded me that Noah is exactly the way God wants him, and he is perfect in every way. I put this quote on the fridge. So much truth, and such a great reminder for me.

Noah is getting ear tubes placed in both ears at the end of the month. At first I didn't think much of the procedure, my attitude was more like, well, he has fluid in there, I guess we should get tubes to drain it! Surprisingly he hasn't had any ear infections, ever, but I thought if Dr. P thinks he needs them, of course we'll get them. But I've since heard numerous stories about kids who weren't talking, even at 3+ years old, and just days after having their ear tubes placed they were babbling more, and then talking up a storm! I am praying this will be the case for Noah; praising God for giving him perfect ears to hear and tongue to speak. I don't want to get my hopes up too high, but why not. What I would give to hear Noah say words correctly! To say them at all, really. He is also getting his g-tube site stitched up during his ear tube surgery, not a big deal but it will be so nice to see his sweet belly without that yucky granuloma (scar tissue)!

I'm going through some personal battles lately too, if you wouldn't mind praying for that I would be SO grateful. Starting this week I am only going to work one day a week (because of Noah's surgery and therapy at the end of the month, I am taking an official leave and thus will automatically pass the quarterly hours audit). I am more than looking forward to having more time with my kids, and really being able to focus on my family, being more organized, exercising more, cooking better meals, and being a better wife. I love that with Starbucks, I'm able to only work 20 hours a week and maintain my benefits. But because of Kyle's work, my schedule is all over the place, and I think that's difficult on the kids. Plus, I'm exhausted. Waking up at 3:30 one day, coming home at 10:30 the next, I'm just finding that its unpredictable for the kids, hard to maintain a schedule, and if I don't nap I am not very pleasant to be around! SO not fair to Kyle. Maybe just because I'm too old for this schedule; I used to be able to do it no problem. I did, afterall, turn 28 this year! WHAT!

Financially, we are able to make it work... it will be tight but we can make it work... but our benefits are priceless. It will be interesting to see how everything goes in the next couple of months (I will have to return to 20 hours/week at the end of September). I am praying about maintaining this schedule and finding alternate insurance options. But we will see. I may just go crazy being home this much!

I also had a "falling out" (I hate that phrase, but what else do you call it?) with someone very close to me, that I have been deeply saddened by and have been trying to work through the complicated emotions that have accompanied the loss of relationship. I am surprised at how deeply its affected me. I feel like its affected other relationships in my life, and I feel even more awful about that. I haven't been a good friend to some other very important people in my life.

I think, to sum it up, I just feel like a mess. I know that God is working on me, stretching me, teaching me... in some ways I feel like I have grown so much as a person and learned so much in this short life of mine that I am strong, I can handle things with control, poise, confidence... but in the past few weeks I'm remembering and accepting that I am SO broken. Beyond broken. I am such a work in progress, and I will never be done growing, maturing, falling down and leaning on the cross to get back on my feet. I want to appear like I've got it all together. I think in a way, we all do. But when you can admit that you don't, there is freedom. Knowing that there is no possible way for me to be every little thing I want to be. And then being okay with who I am, who God has created me to be. That is enough, because His grace is sufficient for any amount that I fall short. If we're close to perfect or far far away from it. It JUST. DOESN'T. MATTER. It's been a very beautiful reminder of my reliance on the Lord.

For the past couple weeks, I have said this to myself over and over throughout the day when I have felt like a dork, or just weak, or like a failed friend, mom, wife, whatever.

His mercies are new every morning. (Somewhere in Lamentations)

No matter what happened the day before, or how I've failed, or said something I shouldn't have, or didn't react in a Christ-like way, or felt insecure about something, or didn't react in the best way to something the kids did or didn't do,

His mercies are new every morning.

It's such a refreshing reminder. Between this, and Psalm 23.

He makes me lie down in green pastures; He leads me beside quiet waters.

My refuge...

~

Oh, did I mention we put the TV in the garage for the summer!? Ahhh! It has been fabulous. I really think this has contributed positively to Noah's strides in speech. I don't know how long it will last (maybe we can bring it in for a friday night movie night, then I have a feeling that will become an every other night movie night thing, etc)! Ha.

Paintin'
Running between appts (Love Noah's face in this one!)
Wish she would smile normal for a picture! She's awesome.
Smoochin'
Trying to figure out if she is real...
Ticklin'
Toy Story 3! This girl is hilarious.
Magnum
Wrastling during appointments

Uncompensated Care at Seattle Children's Hospital: Noah's Story

Make sure you turn off the music at the bottom of the page so you can hear the video!

Here is the video that Children's made to raise money for Uncompensated Care... very blessed to be a part of this by telling Noah's story! Annnnnnnd pretty sure the camera adds 30lbs? Hahahaha totally kidding! Not about me!

all done

Gettin' lots of pressure from Noah's "Prayer Aunties" in Southern CA to update the blog, so I better get on it! And I don't have pictures on this computer to upload from his birthday and this last month, but I will be sure to upload some this next week. Pinky promise!

What a month its been!

January started with the kids and I going to an evalulation in Speech and Language at Children's. With Noah missing a few communication milestones, plus him not saying words, we thought right around his 2nd birthday would be good timing.

Thankfully Ella was able to go down to the sibling playroom during the 1 hr. and 45 minute appointment, that place is a God-send! Tell me why we haven't taken advantage of this these past two years?! She loved it, got oodles of attention from a bunch of volunteers, and got to paint for two hours! She was in heaven. So it was just Noah and I in the little tiny room for his evaluation.

Basically she said that Noah has lots of holes in his communication and language development. He does some things, but doesn't do others. Which we knew. For example, if you ask Noah where his nose is, or your nose, he won't tell you. Not because he's confused and can't figure it out, he is just completely uninterested. During the evaluation, she asked me lots of questions and then would ask Noah to do a task, and if he didn't do it correctly or respond correctly, she would put a big fat zero on the little scorecard she had. Which, don't get me wrong. I understand they have to have some point of objective scoring to evaluate these kids. But I was shocked when she told me that, according to this nifty little scorecard, Noah falls in the 1% for his speech and language development. WHHHHHUUUUUUAAAAAAT!? She admitted though that she didn't think this was the most accurate representation of Noah, considering there are holes, he is able to do other things in the S&L realm that aren't necessarily tested.

She also said:

• He doesn't have the attention span to figure out or care what you want him to do, or how you want him to interact
• Kids with facial abnormalities (including LMs) are usually able to talk, it just doesn't come out correctly because of the structural differences (Noah's tongue is huge and has big cysts in his cheeks and mouth, so, words will probably come out different. We expect this), or a lot of LM kids use sign language (Noah has never been interested, we have tried since he was 9 months old). Basically she was saying that by now he should have figured out some way to communicate better than crying or whining.
• She expects Noah to do very well with speech therapy and possibly some OT.
• At this point we are not talking DISORDER, just delay. Well, duh. I was annoyed she even said this, but I guess they have to. I just hate the labels that the medical community so easily seems to place on these kiddos.

At first I kinda took this information with a grain of salt, didn't think much of it but was still pretty bummed about the whole 1% thing. Then as I started driving home I just got really emotional about it all. I explained it to my mom like feeling I was just at the foot of another big mountain that we had to climb! Just bummed out, overwhelmed, not knowing what to expect, and just sad that we don't communicate better with Noah. We communicate with him in so many other ways that aren't specific words or signs. He is the most active, loving little boy.

monday.

Then a week later we had a second evaluation in Wenatchee, at the Achieve Center where he would be receiving his therapy. So different from the eval at Children's! The speech pathologist was warm, but professional, and for her evaluation she asked questions and just took notes on a yellow legal pad. No scorecards. She just said that her therapy is all play-based, and when Noah too quickly loses interest in something or his short-attention span takes over, she said she is like a circus act trying to get the kids to stay focused longer... but she does what she's gotta do! She said it may take time, but she is not worried about Noah not getting to where he needs to be. She said that the rules will change at home for the expectations that we will have of Noah, hand-over-hand signing, etc. She said he will get frustrated when we don't give him what he needs or wants just by crying. We just thought Noah couldn't do it. But according to her, he can, and he will learn to communicate even if we have to force him! Love her!

These are our exact feelings! We know Noah is okay, we just need to give him a little push. God has made us all so different, why should we all learn to do things at the same time and communicate in the same way? I left feeling optimistic, and thankful for a God bigger than all the therapists in the world!

That night, I was getting Noah out of his high chair and signing ALL DONE, then putting my hands over his and signing it, and saying it with lots of inflection in my voice and in a screaching high pitch! Noah was laughing and smiling, then he kinda stopped and looked like he was concentrating, about to say something. His hands came out, he signed "all done" and out of his mouth came a very muffled but obvious "ALL DONE!" I was in tears! He's bilingual! :)

God knew exactly what we needed and when we needed it. It was almost like he was saying, "trust me, I know what I'm doing... I will never leave Noah". This is HUGE!

tuesday.

We woke up, ate breakfast, and as I was changing Noah out of his jammies, I unzipped them to find NO G-TUBE and the hole in Noah's stomach completely healed shut! Whhhhaaaaat!? I scrambled to find his tube, found it in the foot of his jammies... but realized there was no way I was going to be able to get in a new tube. His tube has come out a few times before, and usually it is just a scramble up to his changing table to get a new one put in place so the hole doesn't close (only takes about 45 minutes, our bodies are seriously amazing). But this time, it had come out at some point during the night with plenty of time to close up without anyone even noticing.

We were planning on removing it at some point in February, but wanted to wait until his appt. on Feb. 2nd to make sure we weren't doing surgery this spring (that's why we left it in this long in the first place, to help hydrate after surgery so he doesn't have to be in the hospital as long with IVs). But, today was the day. His tube was out, his belly so flat. He had that big ole thing in since he was 4 months old. It sustained his life, we are so grateful that God has given man the ability to do these medical miracles, but were ecastic to see our little boy's belly lookin' so flat! Children's said that as long as it doesn't leak, there's no reason to have it stitched up, the body should heal the hole just fine. We haven't really seen any leaking yet, but he still has a nasty granuloma coming out of it that can just be burned off with silver nitrate sticks. Small fix. So awesome!

thursday.

Noah's 2nd birthday! Happy Birthday, Noah! We spent some of the day in the clinic because Ella has pink eye (which she said is cool to have because it has a cool name), then celebrated with lunch at Applebees (We're pretty fancy folk). That night, we went to a Sanctity of Life Celebration for Life Choices of Wenatchee (Pro-life Pregnancy Care clinic here in town), and were able to tell a little bit of Noah's story. It was an awesome way to celebrate his birthday!

We are so blessed to see God's hand at work in this boy's life! I can't believe God chose me to raise Noah. It's pretty overwhelming to learn about God's character through these trials in my life as He refines my character... it just helps me to realize how much He loves me and my son... He still is the God of miracles.

"Then one of them, when he saw he was healed, turned back, praising God with a loud voice..." saying ALL DONE!... then "He fell with his face to the ground at Jesus' feet and thanked him". Or, his mama did. :) Luke 17:15

Thanks for checking in on our sweet little man!