Friday, February 27, 2009

quick update--with new news at the bottom!

I just have time for a quick note--today's crazy, with speech therapy, dental appointments, and BASKETBALL! Hailey's team is doing incredibly and will play next week in the state tournament. GO WARRIORS!!!

My nephew Nicholas was admitted to the hospital on Monday evening for his Total Body Irradiation (TBI) that must be completed prior to the bone marrow transplant. He has two more doses today, then he'll have chemo over the weekend, all in prep for Tuesday's transplant. He's handling things amazingly well and has totally blown his doctor away with his strength and health. This afternoon, he will have an NG (naso-gastric) feeding tube inserted into his nose so that when he gets the mouth sores (and throat sores, and esophageal sores, and...well, you get the picture) he can still have his oral meds and be fed. That doesn't sound like much fun to Nick, but in true Nick style, he's handled the information well.

Pam and Ted are doing well, and Tony comes back this direction today. Originally, he was going to stay through March 8, but a couple days ago he found out that his employer had no more work and Tony's out of a job. Please pray for them--that this will be a total blessing instead of a horrific blow. It is our prayer that through this layoff, Tony will find SOMETHING out here that will allow him to be with his family for the next 3-4 months while Nick recovers. God is able, we know that!

Thanks for the prayers!

Updated to add this: As I was walking out the door this morning, my phone rang. It was Pam, and she needed help. Ted got sick at school this morning! It's definitely nothing serious, but she couldn't get him and certainly couldn't bring him to the hospital, where Nick's in isolation! So after a quick call to our speech therapist, we headed off to pick up Ted. He's hanging here this afternoon, playing with the little cousins and having fun. He'll go to tonight's basketball game then back to the Ronald McDonald house where he can spend time with his mom! He's thrilled--she'll actually be able to sleep at the apartment tonight since Tony will be here later.

This from Pam just now: Nick HATES the NG tube. Pray that this will not irritate, not be a source of frustration, and that he would heal quickly so it's not needed for long.

Wednesday, February 18, 2009

a funny Ryan story

Ryan LOVES his big brother. Even though he's only 4, Brent is larger than life in Ryan's world. Those two have a relationship that makes me smile to see. Logan's isn't quite the same, since when he came home from China Brent was already out of the house.

Anyway, late last fall Ryan announced that he was tired of volleyball and ready for basketball to begin. He wanted to know if Cam was going to play, and when told yes, he announced that he needed to watch him play. "After all" he said, "I miss watching Brent play!" Now, Brent hasn't played basketball since Ryan was 2! Actually, Ryan had his second birthday in January of Brent's senior year season, so he was REALLY little. But he remembered, and proved it: when Cam warmed up the very first night, Ryan exclaimed, "Cam's wearing Brent's number!"

Fast forward to this week. On Friday, we received a DVD of Brent's best game ever. Played at the state tournament in 2005 when Brent was a sophomore, we've not seen the DVD before. We brought it home on Friday night and watched it. Ryan watched part of it then had to go to bed. Since then he's watched it easily a half dozen times. He spends the entire game yelling at the TV, shouting "Great shot" "Go Brent" "Get that rebound, Brent" and other things. Every time, he's thrilled (and surprised!) that our team wins and that Brent has played so well. Today when it was over, Ryan asked if he could watch again after lunch. He told me he wanted to see if Brent's team could beat the white team one more time, and if Brent would score as many points as he did this morning. And every time, at the end of the game, he says with a smile and a sigh, "Oh Brent. That's MY brother!!"

Brother love. It's fun to watch. Especially when the big brother is so tender with the little one. Thanks Brent. You're awesome and amazing, and I love you!

Two of my favorite guys, taken in August 2006. Brent was 17; Ryan was 19 months.

don't get comfortable!

Not much happening around here--playing the waiting game as the regular basketball season is officially over and the playoffs don't begin until Saturday. Plus, it's "mid-winter break" for many of our activities, so the boys and I have spent the week playing and having special fun instead of our regular routine. Today the sun in shining so we washed a whole winter's worth of dirt and sand off my car. Finally!! Of course, you know what that means: bring on the rain! :\

As we spend time with Hailey talking about college and have phone conversations with Brent about his future, I have started to come to terms with the fact that hanging out in the "comfort zone" just ain't gonna happen. I'm finding that it's too easy to become complacent, too easy to rely on myself or my husband and family, too easy to believe that I can do this on my own. God's showing me that HE is the one in charge, that even when I don't like what's going on, HE is in control. Psalm 46:1-2 has become my theme for now: "God is our refuge and strength, an ever present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea..."

Even as things change in my world, I am grateful for the things I've learned over the years and know that these things too will someday become added to the valuable lessons. Being able to share with a dear friend some of our homeschooling experiences--the good and the bad--and encourage her as she starts her journey has given me hope. Hope that the experiences of life with teens, life with almost-college kids, and life with college kids and their decision making will someday be valuable to others as well. And I pray that my fear and little faith will not hinder my children or those who watch us, in real life and on the internet.

Saturday, February 14, 2009

back to square one

Well, Logan didn't qualify for the preschool. I was quite surprised by that. He does qualify for speech therapy (which is nice--the school's about 6 blocks from home) and we will add that to the private speech he already gets. MORE speech therapy won't hurt him! But his fine motor skills are within the range of normal, and because his language delay is so severe they don't think putting him in a special needs preschool with language delayed students is a good idea. Their recommendation was for Logan to attend a private preschool with "typically developing" preschoolers. (Oh, how I HATE politically correct terminology!!)

They tested his receptive and expressive language skills and made their recommendation based on the results. His expressive language (the words he says) tested in the 1st percentile. Based on the results they shared, I would guess that puts him at about the 24 month level. I was surprised by that--while his speech is NOT clear, he communicates way better than the students in my preschool class, who are that age! I know that some of it is truly a speech issue. He couldn't label scissors when asked. Well, he can't say the word! But he knows what they are, knows what they do, knows where to find them in the house, and can ask for them appropriately if he needs them. The word he uses just doesn't sound anything like scissors. Also, when showed a picture of a cat, he called it a "meow." Okay by me--I know that meow sounds much like the Chinese word for cat so we've never corrected him on that one. Not a huge worry. He can use all the speech and vocabulary help he can get so we'll go see Miss Mary once or twice a week. The part of the testing that blew me away, though, was the receptive language. Receptive language measures how much he understands. I would have guessed that Logan's receptive language was about the 36 month mark. That's pretty good for 9 months in the states, and we would be fine with that. But I was SO surprised! His receptive language tested in at 54 months, or 4 years 4 months, which is his current age!! Apparently our little sponge is soaking up WAY more than we thought. Just proves what we've always felt--that there's a very bright little mind inside our sweet boy, one that just needs more help unlocking the words and the speech so he can tell us clearly what's on his mind.

So we're back to square one. In many ways I'm relieved and thankful. Relieved because I don't have to rearrange our lives to accommodate the special needs preschool. Thankful because I've seen so clearly that God is leading here. We've investigated preschools and different options for Logan, and God has clearly closed the door on many/most choices. It's what I needed to see. For next year, the boys will probably be home with me again, doing our normal routine of life. And when I need a break, I'll take one! : )

Our next step is his hearing, again. We see the audiologist and the ENT on March 11. I truly believe that the eartubes have done nothing for him, and that he'll fail yet another hearing test. That's okay by me! Let's move forward and get this guy some hearing! I suspect that once we do, his language will take off. Then, watch out world...

Thursday, February 12, 2009

so incredibly out of my league

Today is our IEP meeting with the school district about Logan. I'm frazzled. This is a totally new area for me, with a huge learning curve. Theoretically, Logan should automatically qualify for services based on his hearing loss and his cleft lip/cleft palate. When you add in his "orphanage delays" in gross and fine motor skills, his sensory integration issues, and the possibility of some oral motor planning issues, it should be a slam dunk. So why am I worried??

Part of it comes from the fact that I don't have a real "warm fuzzy" feeling about the Occupational Therapist on our local campus. I like the speech therapist but the OT has rubbed me wrong. She's given very little indication that she understands why Logan might be delayed (you try living with 8 other children exactly your age and see how you develop!) or about why he struggles with being left (again, imagine what it would be like to have a history of being left without warning, then see how long it takes you to trust that those around you will be back when they say). She's bordered on "short" with Logan and in the assessments provided very little positive feedback. Now, don't misunderstand me--I don't for a single instance think that she needs to be Logan's new best friend. But really--please treat him with kindness and respect, and applaud his efforts. They may not be where they should be, or even where she might expect, but he IS trying. And while I know he's capable of more than he did for her, I also know that in many areas what he did was better than I expected.

Another piece is simply logistical. Logan is not the only child here, and I am not all about upending everyone else to accommodate his needs. We need to be able to compromise so that he can get what he needs without sacrificing my time and commitments to the others. I have heard mixed reviews on their willingness to work with families, so it makes me nervous. We'll see.

Then there are the other questions: What is done in speech? Is it group or individual? (Individual is probably better for Logan, given his difficulties.) Do we pursue an assessment for apraxia? Where? With Tina, who we love? Or with the school system? Will they work together well? Will he continue to progress in his gross motor skills if he quits tumbling for preschool? Will they evaluate him for PT for his gross motor delay if he's not doing tumbling? He didn't qualify for PT in the past, but just barely. Quitting the tumbling will likely slow his progress. How do we deal with his hearing loss? Especially in light of the fact that he has another hearing test in 3 weeks? One that may, eventually, get him some hearing aids. Then what?

And then there are biggest, hardest questions of all: How do we convince him that being away from Mom and Ryan 3 days a week is best for him? How do I provide him with the one-on-one time he craves when he's not here part of the day? How do we explain to him that we love him just as much as we love Ryan, when Ryan gets undivided attention every day from Mom and he has to go to school and therapy? It's already a small problem, and Ryan gets just 35 minutes a week with me. While we sit in the corner at speech therapy, watching Logan work with Tina. If that's hard, what would preschool 3 days a week do to him?

So many questions. So few answers. Hopefully, in a few hours, there will be more answers, not more questions.
Helping Daddy is always fun. Especially when you can use the tools!

Thursday, February 5, 2009

with tears of JOY


His bone marrow is clear...and the transplant is scheduled for March 3.

Thank you for your prayers. Please don't stop now. :)

Wednesday, February 4, 2009

some days feel like the poker hand has a joker

What else could it be? I mean, after all, life here is (supposed to be) perfect, right? Everything goes according to the carefully scripted plan, no one ever misbehaves or makes mistakes, and certainly no one has way more issues than originally anticipated.

Yeah right. Not this week. Nothing huge, nothing insurmountable, but still, the discouragement is hard. The little guys went with me Monday morning to observe at a preschool we were considering for them. A dear friend of mine is the director, and she kindly offered the opportunity so we took it. Ryan was enchanted. He loved every minute of it and was disappointed when we left. No surprises there. It would be an awesome fit for him, one where he'd thrive and grow. It's the kind of thing I want for him before he is old enough for kindergarten, especially since we'll likely homeschool both of them then.

Watching, though, I came to the gut wrenching realization that Logan's probably not ready for this. It's not his academic ability--he's smart as a whip and proud of it. :) It's not his attention span--he can sit for long periods if he's interested in what's going on. Those things don't concern me at all. It's the language portion. His speech is coming along, but we're still years away from being mostly comprehensible (to outsiders). His hearing is a problem, one that we're working on, but a solution is probably months away yet. We hope and pray that restoring some hearing will help with the language, but that's not certain. It's not even certain that we can restore hearing! The biggest issue with overall language is his inability to do oral motor planning. What does that mean? Well, you and I don't spend any time thinking about what to do with our mouths when we talk, where the tongue goes, what shape our lips should be in, how the air will flow. For Logan, those are HUGE issues that he must think about and make decisions on. For EVERY sound. He talks a blue streak, but if you want to hear more than just vowel sounds, it's painstakingly slow as he sorts through the facial gyrations necessary for each consonant. And it's frustrating for him! Poor guy--having a conversation is grueling work.

His gross motor skills are still delayed quite some. Not enough to qualify for physical therapy, but the delay is still quite obvious. His tumbling class has helped quite a bit but I'd venture to say that he's a minimum of 6 months behind his same-age peers. His fine motor skills are also delayed. We think he's qualified for help from the school system in this area, but don't know for sure yet. We'll know more on that next week. His sensory integration issues are a big deal and hold him up often. Again, he's borderline here, so he doesn't qualify for therapy. We wonder if he has an auditory processing issue or if all his difficulties with language are hearing and motor planning related. There are some things that make me think at least a portion of it is auditory processing. In addition, he (and Ryan!) have some minor health issues that we never anticipated. Not enough to require treatment at this time, but they still need to be monitored for the next year or so.

So now we get to make decisions. Because of his cleft and his hearing, it's highly likely that Logan qualifies for preschool through our local public school. The preschool operates on a "peer model" basis, so Ryan could attend as a "normally abled" child. (Such PC terms! UGH!!) I don't know if I really want my guys in preschool 4 days a week! They do NOT need to be away from home that much and I am concerned that for Logan it might be overwhelming initially. We see huge declines in his coping ability when he's overwhelmed. And if things are too much, then we have horrific struggles with the "who's in charge" portion of life. Yes, we still have control issues. They're better than they were but changes can trigger horrible, long, drawn-out tantrums. Only time and reassurance that no matter how much he dislikes it, Mama and Daddy are still in charge seem to help. He HATES that he's not in charge but if given any control he freaks out. It's a balancing act to be sure...

The big questions as we move forward: Will they allow us to enroll the boys only 3 days a week? Is this truly the right place for them? Do I allow the school to separate the twosome? They do amazingly well together at preschool on Tuesdays and my gut says they'll both do better together. Will the school system go for that? How hard do I push? Where do I compromise and where do I stick to my guns? Too many questions...and too few answers.

The joker of unexpected needs is interesting, to say the least. Logan is just like any other child of ours--OURS. Forever. That part's easy. The harder part is knowing how to negotiate the system to get him the help he needs without sacrificing any of the other guys. But we'll make it, and we'll thrive. After all, what doesn't kill you makes you stronger, right? :)

In the meantime, we cling to the things we know:

"And we know that in all things God works for the good of those who love Him and are called according to His purpose." Romans 8:28

"When you pass through the waters, I will be with you; and when you pass through the rivers they will not sweep over you. When you walk through the fire you will not be burned; the flames will not set you ablaze." Is 43:2

Grateful for supernatural strength,


Sunday, February 1, 2009

fun opportunity

A couple of days ago I shared about Lydia, Tuesday, and Abby. (See my post titled Perspective) Well, Abby's family has a great magazine called Serious. Life. Magazine. I've had fun reading it, and it talks about all sorts of things: adoption, family, money, name it, it's covered. The next issue comes out online tomorrow morning! And for fun, Brent (Abby's dad, the publisher) has included a list of great blogs (including ours!) to check out. So head on over to Serious.Life.Magazine and look for yourself!

Enjoy!! I know I will...