Wednesday, December 5, 2012

Until next year...

Judah's appointments went well overall.

Our time with the craniofacial team at BoysTown was a breeze. Only [mostly] good reports there! The big procedures that are yet to come are far enough down the road that we still don't really have to think about them much. There will be another palate repair, but Judah's new plastic surgeon is confident that it will be a relatively simple fix and Judah should respond well. That won't happen for at least another year. All the dental work that needs to be done won't start being necessary until Judah hits 5 or 6, and then there will be several procedures over the next several years. Blech. We enjoyed reconnecting with the other specialists we saw that day, and we had fun hearing them "Ooh" & "Aah" over all the progress Judah has made in the last year. They really are a great team.

The round of urology tests that took place at Children's went...well, I guess. I mean, probably as well as they could have, given everything Judah underwent that day. That kid is truly a rock star. He inspires me. There has been just enough improvement in Judah's reflux that we can wait until next year to re-test, and should still be able to put off a major surgical repair until he's 6. Huh. That could be a big year for him. Blech. Anyway, I'm encouraged, because although his kidneys & whole urological system are pretty much a mess, he's staying infection-free & his quality of life is great! Should he end up with any more kidney infections, the doctor would do the repairs then; but so far so good.

Thanks so much for praying that day! I still wrestle with "Why God?" Syndrome sometimes (super frustrating, because I feel like I should be WAY beyond that by now!!!), but I believe that God works in my heart through your prayers and continues to draw me to Himself even as I question. I believe that your prayers are powerful in Judah's life, even though I can't see it...yet.

P.S. Judah is learning how to put his coat on at school! He totally surprised me the other day before school when he almost got it on all by himself! Each time he masters a new task/skill, or even gets close, his whole face lights up! It's so much fun to see. My little boy is growing up:)

Thursday, November 8, 2012

The Annuals

There are a few things to be praying about. But before we go there, let's talk about some fun things first!

Judah is dressing himself! Well, very nearly. When it's time to get dressed he insists on doing it all by himself - shirt, pants, socks. The socks he nailed awhile ago. As a matter of fact, any time he sees socks lying around (which, let's face it, is a common occurrence around here) he puts them on. He's usually walking around with way-too-big socks on his feet - too cute! The shirt he's got a handle on...as long as he doesn't try putting it on upside down first. Or feet first. The pants. More often than not he pulls the penguin-two-legs-on-the-same-side maneuver. With a little help and a 2nd chance, he's got it. He likes pulling his pants up while standing, which is a little challenging (read: comical), but he gets it. Eventually. It's so fun celebrating each little accomplishment that is represented in the "simple" task of getting dressed! And Judah is always so proud of himself! We've seen Judah taking small steps towards independence more regularly since starting school. They're so good at teaching him skills that allow him to be more independent, and he responds so well to them. I am extremely thankful for the team he has on his side at school. They challenge him and push him, but they cheer him on and love him well, too.

Judah had a 2nd field trip right before Halloween. All the pre-school kids went to school in their costumes and then visited a retirement home. They sang songs to the residents and had a snack with them. I would have paid money to be a fly on the wall! After their visit they went back to school to put on a costume parade for the parents/grandparents/guardians that could be there. Daddy & Gramps represented:)

I've never seen Super Mario look better!
Speaking of Halloween, we went Trick-or-Treating for the 1st time this year! After the 1st house Judah knew exactly what was going on! He had so much fun being like one of the big kids, going from house to house, picking treats from the bowls & dropping them in his bucket. It was awesome to see him doing so much walking between houses, and walking with one of us up to each door. He had a big smile for every person that gave him candy...although he still has no idea what it is! Not sad about that.

Eli was our resident mechanic (like Gramps), we had a celeb visit from Taylor Martinez, Lydia provided dessert, & of course, Mario:)
She stuck pretty close to him all night.

Judah learned "Where Is Thumbkin" last week at school. Oh my gosh, just when I thought he couldn't possibly get any cuter... He has added it to his repertoire of songs he "hums" throughout the day. I am having so much fun with him!

Judah LOVES Ollie! I'm not sure the feeling is always mutual; but Judah is oblivious and utterly devoted. When he gets off the van after school he has a smile for me, but the 1st thing out of his mouth is always "Ollie"! He's been going through a tough bedtime phase. Last night, for the 1st time, we put Ollie on his bed with him when he was upset, trying to settle down. He got quiet right away and went to sleep, in spite of Ollie's wiggling. I think it's time to train Ollie to go to bed with Judah.

Judah has a new word: "hot"! Whenever I put something hot in front of him at the table he says, "Ha, ha" and blows. We're also working on some new signs. "I'm sorry" is at the top of that list...for all the times he hits his sister to get her attention. At least he's genuine in his apology!

A few things to pray about:

1. Judah has had elevated blood pressure from the beginning. In the last 18 months his endocrinologist and I have talked about it on and off. Last week he recommended taking action, since Judah's BP is consistently in the 95th percentile. We saw the ped. yesterday, and Judah's BP was actually higher than mine. That's not really unusual for him, but it's high for a little kid. I will be monitoring his BP from home over the next 4 weeks, and then he will most likely join a BP clinic at Children's and go on a blood pressure medication. The tricky thing about Judah is that, because of his kidney disease AND his pituitary disease, there isn't an ideal med. for him. He'll need to be watched closely for quite awhile. I'm sad about adding a medication, but it's the possible side effects that concern me. The high BP is probably because of all of his kidney problems, so my hope is that once he's had some repair there, the BP will drop on its own.

2. Next week Judah has 2 huge clinic appointments. On Tuesday we spend the morning in clinic with his cranio-facial team. I think we're seeing 6 specialists, including his geneticist. I'm looking forward to seeing her! It's been over a year since she's seen Judah. I know she'll ooh and aah over him:) On Thursday we spend the day at Children's in urology. I'm already very apprehensive about this one. Judah will be uncomfortable at best for most of the day. Some of this clinic will be downright painful. It breaks my heart; and as he gets older it only gets harder for him. I've downloaded some apps for him on Jared's ipod in hopes of being able to thoroughly distract/entertain him, since he's not allowed to play with Dad's ipod at home. It's just icky. Icky.

I really appreciate your prayers for Judah as we head into next week and this particular clinic especially. I'm also praying for good reports all around from both clinics...although I'm not entirely sure what a good one would be at this point. Even neutral news, without any bad news, would be good. *sigh* I'm so glad God goes with us. I couldn't do this without His sustaining love and faithfulness.


Friday, October 19, 2012

Judah went on his 1st field trip on the 15th! Oh. My. Word. I don't think I've ever seen anything so cute in my life! Judah & his class at a pumpkin patch? Oh yes. The sheer volume of adorable was almost too much. I had a great time with him; plus it was a great opportunity for me to meet some other parents while also reconnecting with his teacher and paras. I even met paras from some of the other preschool classes at Judah's school. Everyone seems to know Judah. I'm not surprised.

He loved petting the goats!

He did so well walking all over the farm. It was hard work, & there were plenty of spills, but I had so much fun watching him get around.

He picked out a pumpkin & got to paint it. It is proudly displayed on our front porch! 

Second set of goats. This one liked Judah!

He kept "kissing" the cage. I think he just wanted to snuggle that bunny! 

He hung out in this corn teepee for awhile. Every boy loves a good fort, right? 

We both had a great time on his 1st hay ride!

Trying to put the beanbags through the holes was a challenge...especially with a classmate peeking through! 

He's all about posing for the camera.

Judah thought this was the funniest thing! I have to agree.

Thursday, September 27, 2012

He's growing up!

Yesterday I took that adorable 3 year old to see his allergist/pulmonologist for a follow-up & a peanut challenge. Judah did great. He colored during most of the 2 hr. appointment & handled all that peanut butter like a trooper. For those of you who don't know what a food challenge looks like... The goal is for the child to be able to eat an entire serving of the food without reacting to it. They start by allowing the food to touch his skin for 10 min., & then go from there. The serving size of peanut butter is 2 tablespoons. We started by giving him just a tiny bit; but every 10 min., as long as there was no reaction, he got a larger portion and a larger portion...until by the time we got to the last challenge, he had to take an entire tablespoon of peanut butter at once! He decided to break that up into several smaller bites, but that poor kid was smacking his lips long after we left the office. The good news is that he passed! His future looks bright with Dad's grilled peanut butter and jelly sandwiches on his horizon!
No kid wears food like Judah. 

Staying mentally & physically engaged during the waits.
I passed!
Because he's doing so well with the slight increase of proactive breathing treatments (he kicked a cold "on his own") & staying healthy overall now, we've decided it's time to add a day at school! He loves school so much & we're seeing so many new or improved things from him, that we can't think of a good reason to keep him home! Well, I could think of a few selfish ones...but I won't allow those to hold him back. I talked to his teacher about it, and she recommended adding Tuesday. I called transportation this morning, and he's all set to start next week! Three mornings a week. Three! Oh my goodness. That means I have another morning to myself! Huh. I wonder what God will fill that with. Anyway, Judah is growing up and changing and becoming more independent and learning new things. It's exciting...a little bittersweet...but exciting!

It's been fun for us to watch him take steps to become more independent. This morning at 6:30, Jared thought he heard something coming from Ezra & Judah's room. He peeked inside, and there was Judah, on the floor next to his bed, playing quietly with his toys in the dark. Happy as could be. I don't love the fact that we had to share our quiet time with him this morning; however, I do love that he got himself down to play quietly and woke up so happy:) I think Ezra was a little confused this morning, but that's OK.

When you think of it, pray specifically for Judah's communication abilities. This is something I'm feeling increasingly more anxious about, because we're not seeing much progress in the way of actual words or new sounds. His speech therapist is using a communication device with him at school, but the going is slow there, too. I can't tell you how badly I want him to have words! This is something I consciously need to surrender to the Lord, but I haven't yet. I'm having a hard time letting go of what I want for Judah, and clinging to God's best for him.



Thanks for praying.

Wednesday, September 12, 2012

So...

...I think Judah ate poop today.

Tuesday, September 11, 2012

That Boy

Recently I decided that our life as the Stewart family would make a great comic strip. There are so many times in my week - or day - that if I don't laugh, I fear I will either walk away or have to be committed. I figured, why keep all the good laughs to ourselves? Let's share some with the rest of the world; and then maybe they won't notice that my laundry isn't folded, or my kids don't match, or I'm not wearing any make-up, or the dust in an inch thick. Or maybe they'll at least be more forgiving. 

When I started thinking of all the most recent comic strip-worthy moments I was slightly surprised by an emerging pattern. Contrary to what I anticipated, all 4 of my children were NOT equal participants in our crazy moments. They play their parts for sure; but the number 1 culprit of my messiest, gray-hair-producing, OHMYGOODNESSWHATAREYOUDOINGSTOOOOOP! moments is...Judah. Yes, the one who inspires little old ladies to ooh and aah and pinch his cheeks. The one who evokes feelings of triumph and celebration in the hearts of all who know him. The one whose smile lights up every room he walks into. Ya. That one. 

Within the last 8 days alone he has...

...pooped in the tub. With Ezra. Again.
...crawled out of his big boy bed and up into Ezra's bed to snuggle when he's supposed to be     SLEEPING numerous times and he thinks it's so cute when he does it but Ezra is trying to go to  sleep and I am trying to relax andhejustwon'tstayinhisbed! Whose idea was it to move this kid into a  real bed anyway?
...inspired me to yell right into my mother's ear on the phone, "JUDAH, DON'T EAT THE SOAP!" Lydia was washing the van and Judah saw the soapy water in the bucket and...well, there's no surprise ending here.
...taken the powdered sugar shaker off of the dining room table and given it to Ollie. Again, I think you can see how that ended. *sigh*
...tried "helping" me at ALDI by putting the carton of eggs on the belt at the register. Boy that kid is fast. I turn around for just a second...! I was able to salvage half the carton. Tina, the cashier, made my day by giving me another full carton for free. 

Is it any wonder I have more gray hairs than I should and go through an unreasonable amount of antibacterial wipes canisters?! 

It's a good thing he's so cute. And charming. And endearing and funny and snuggly and wonderful. 



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This is the day we drove to KS and picked up the newest Stewart: Oliver Edward. Because clearly our 4 kids and countless high school students just weren't providing the level of excitement we crave. 



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Judah is walking, walking, walking! He gets more confident and coordinated every day. I just can't get enough of watching him walk!


Makin' the ladies weak in the knees

I was cleaning at the old house. He was self-entertaining.

He loves a good party, & this one was for Daddy.

He also loves a good donut.

He was so proud of himself for crawling onto Gramps's towel. It only took him 5 minutes to get fully situated.

There's nothing but sweet in this picture. He knows he can lean on his brother any time.

Friday, August 24, 2012

First, First, First

August 16 was the first day of school for all 4 of my kiddos. First day of 5th grade, first day of 2nd grade, first day of Kindergarten, and all in a brand new school to boot! (Ridiculously lengthy post to come about that.) And let's not forget Judah's very first day of preschool! 

These are my 3 amazing, beautiful, growing-up-WAY-too-fast older children:





I was a proud mama as I walked these 3 cuties into their new school and classrooms. I was also nervous, apprehensive, and sad to lose Lydia. I'm just choosing to focus on the pride part, because that's a much better caption for this picture. So, I said farewell to these little monkeys, and went on my pretending-to-be-merry way to see about Judah's first day of school. And here he is, my darling little pre-schooler on the first day of school...that wasn't.

That's right. Judah spent the day with the wonderful nurses of the PICU and the 6th floor at Children's.

On the 14th, I took Judah to the ER in respiratory distress. He was already on meds for a sinus infection, but then got hit with a virus that I'm pretty sure he got from his generous-to-a-fault sister;) The combination of the 2 was enough of a trigger for his lungs to tighten up, and we couldn't get it under control at home. He was in the ER for several hours before being admitted to the PICU, due to the fact that the ER doc. couldn't get it under control either. He ended up being on continuous albuterol for about 24 hrs. before finally being slooowly weaned from that to a lower dose and then moved upstairs to 6 on Thursday. It was a scary 24 hrs. for us. And it was horrible to watch the effects of the albuterol on my darling, sweet, laid back boy. The medicine that could open up his lungs and allow him to breathe is also the medicine that made him uncontrollably jittery and combative. A very hard thing for this mama to watch. During this stay we also hit the 2 floors that had previously eluded us: the PICU & 6. While I'm not exactly thrilled about meeting such a "goal", it did give me the opportunity to spread my sphere of influence and make connections with new docs and nurses. And even though we were in uncharted territory, God still had people we know on those floors, whether it was a passing Care Partner or a nurse we know from 5th. We even had the Attending we had on 4th all last summer! God really takes care of me when I'm nervous about being in "the new". Friday we came home, and then spent the weekend not doing much of anything. We finally had some good quality family time on Sunday. Monday I took Judah back to the pulmonolgist for follow-up and a new pro-active/profilactic plan of action. FINALLY yesterday, my BIG BOY got to go to his FIRST DAY OF PRE-SCHOOL!

We waited for the van outside, and his face lit up when he saw it. He walked (with his walker) himself right up to the van door and waited for his driver to open it up for him. He was so happy to see her. And he was off!

It was strange for me to be home alone. To pass the time I swept, mopped, walked the dog (another post to come), wiped down all our dining room chairs, pottied the dog, dusted, washed the sliding glass and front door, and then checked my watch to see how close I was to having Judah home. I wasn't. It was 9:50. I still had 2 hours! So...I thawed chicken for supper, put laundry away, and plopped down in front of the T.V. to watch "Say Yes to the Dress" on Netflix. (For the first time that I can remember, I was actually instructed by my husband AND my mom to "waste some time". Weird.) At 11:40 I went outside to wait for my boy.

I could see him pointing and smiling at me through the van window:) He was in the BEST mood! I also got a note from his teacher (a gift and a treasure to me) about all the things he did at school. Something I asked her to do for me, if she had time, since Judah can't tell me. He was so expressive and animated as I asked him specific things about his day; and when I started singing "Twinkle, Twinkle", a song they sang this morning, he started dancing and doing the hand motions with me! I didn't even know he knew them! At the end he bounced up and down and clapped! It was such an amazing moment for me, and I'm so thankful I had that with him.

School is going to be so good for him. I can't believe how far God has brought me in this; how He has gently addressed and dealt with each one of my fears and anxieties. I am now so happy for Judah and so excited to see how he is going to grow and be challenged this year. If we can keep him healthy, then we'll probably move to 3 mornings a week rather than 2 before the semester is over. He loves it too much, and I really can't find any good reason to keep him home with me. I certainly can't provide everything he gets at school. It's hard to let go, but the smiles on his face and the MANY conversations I've had with school staff and nurses make it easier. They really do take good care of him.

*sigh* My little lion is growing up.

Thursday, June 28, 2012

No Words Needed...

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...just tears, cheers and shouts for JOY! 

Monday, June 18, 2012

Judah's 1st Stroll

One more thing! I took this video of Judah walking with his shopping cart after his birthday party. Sorry it's sideways. I'm not super computer savvy. But at least it's here!

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1st Day at Summer School


Our Little Lion made it through his 1st morning at summer school, his 1st van ride home, and is now sleeping soundly! We left the house at 10:10 this morning to get Judah to school on time. I feared that I was going to hyperventilate on the way there, but I made it without incident. Lots of deep breathing. Holding Jared's hand. Texting my "support group". Finally, we made it & we ALL got out of the van to take him to the entrance of the school. ALL of his siblings AND Daddy gave him big squeeze hugs and kisses before Mom walked him inside. His OT met us at the outside door, which was awesome, and she & I walked Judah down the hall and to his hook to hang up his backpack. As soon as I actually took him into his room he let go of my hand and hit the floor to explore. He found some toys right away, a table he could reach and stand up next to, and the plastic bin containing the song cards for circle time. That boy loves his song cards! He gave me a kiss good-bye, but he didn't even look at me as I stood up to leave...and he certainly didn't turn around to look for me after I walked out the door. I checked. He looked so adorable in that room, crawling around, exploring, a look of wonder on his face as he took in his new surroundings.

Judah's OT sent me this short video during school time, and texted me later to tell me that he had done GREAT & he was on his way home! I love her.

video

We were ALL waiting on the front porch for Judah's van to pull up. My heart broke when I saw him through the window, crying inconsolably. I grabbed him as soon as I could and just about squeezed the tears right out of him! His driver said he didn't like the stops, but did fine as long as she was driving. His van rides are now at the top of my prayer list.

He got plenty of snuggles and hugs as soon as he got home; lunch, and then off to bed. I imagine he'll be taking a nice, long nap today!


Judah's backpack full of non-school supplies. At least it's lightweight! 

Has there ever been a cuter preschooler?

He gave me lots of lovins before we left. Smart boy.

He made himself right at home!

Did I not say I got the PERFECT backpack?!

HAPPY BIRTHDAY JUDAH!

We had a small "family" party on Saturday, the 2nd.
Judah's favorite song card is "All the Fish", so the fish cake was perfect!

He loved every bite.

He had LOTS of birthday cards & pictures to look at, thanks to his siblings & friends.

This year he really got into the presents!

I'm surprised we made it this far into the party without a picture of Judah AND Lydia.

Big Boy Flashlight

BOOKS!!!

He got a shopping cart to walk with & a bike to ride! He is so over the stroller.

1st walk on his new bike

On June 4, we turned around his car seat! 

We sang again & had birthday treat, just us Stewarts.

He wanted to touch the candles. The whole blowing thing is a mystery to him;)

Still his greatest advocate...next to Mommy.

333333333 Happy Birthday, Champ! 333333333 

Sunday, June 17, 2012

A 4-Letter Word

I know there a lot out there, but the 4-letter word I'm thinking of is spelled C-H-A-N-G-E. That word is at the root of my avoiding this post like the plague; because it revolves around change. As I've said before, "Change is hard. Even good change". The last 2 months have been really tough for me as we transition Judah from home-based services to school-based. Yes, you read that right: SCHOOL-BASED. Judah will be attending preschool 2 mornings a week in the fall. There's so much involved in making this transition to school, starting with his summer class, that it's often been overwhelming for me. We had to meet with the school nurse to create 3 - THREE - health plans for Judah. Plan 1: What to do in the event of an allergic reaction to peanuts. Plan 2: What to do in the event that Judah's G-Button comes out. Plan 3: What to do in the event of an emergency or trauma when Judah needs an injection of solu-cortef to replace the stress hormones his body doesn't produce. This boy will have things in his backpack that no kiddo should have to have at school: an Epi Pen (although at least he's not alone on this one!), a G-Button kit, and med/needles for an injection. Not to mention the cup he has to take to school with pre-thickened water in it. Oh my. It's a lot to take in. Is it any wonder I've shed more tears in the last couple months than I have since...well, last summer? My emotions have been all over the place, and letting go of Judah is proving to be much more difficult than I thought it would be. And I thought it would be REEEAAALLY hard! I have been a part of every single aspect of his care since we brought him home from the hospital. I have slept with him through every hospitalization, minus 1 night when Jared insisted I go home to sleep and be with the other 3. I have never missed a therapy session, or a doctor's appointment, or a consult, or a team meeting. I've been there for EVERYTHING! But I can't be there at school. I can't participate in therapy, or translate, or encourage, or comfort, or advocate. I can't cheer for him when he does something new at school, or give him a kiss when he's frustrated by something he's trying to learn. What if he takes his 1st steps at school? What about all the words he says for the 1st time at school? What if he needs something, but his teacher doesn't understand what he's trying to communicate? What if another kid is mean to him, and he can't tell the teacher? I have to let go of all of these things - and so much more - and learn to trust other advocates and providers. Other adults who I know will love him - how could anyone not? - but don't know him like I do. I know that God IS & WILL BE with him, but God isn't going to tap on the teacher's shoulder and say, "Excuse me, but Judah is trying to tell you that he's thirsty." Or whatever. This is SO hard. I'm not alone. Judah's OT & teacher have both reassured me that this is very difficult for each family that walks this road. It's flooded with the tears of moms who love their kids and struggle to let go. 

On the flip side of all that... I am very excited for Judah. Because I know this is best for him, I can celebrate what school will do for him. What he'll learn; the adults he'll grow to love; the kids he'll interact with and learn from, and even teach; what he'll experience there that he can't at home; the ways in which he'll be challenged. I'm excited to see his progress. I can't wait to see him improve his skills and add new ones! He'll get to play on the playground. He loves that! He'll feel like such a BIG kid in those chairs, at the tables, during song time. Oh my goodness, song time! He LOVES music!! He's ready to go! He always handles change better than his mama. 

I've been impressed with everything I've heard about preschool so far. We even went for a classroom visit. That helped. We asked a LOT of questions. We met some of the people that will make up his new services team. They're totally committed to doing everything they can to teach Judah skills that will help him become more independent, as well as provide the care, comfort, & cheering he'll need along the way. I was a little worried about how little he is. His feet don't even touch the floor when he's sitting in the tiny-to-begin-with preschooler chair! But I learned from his current teacher & OT that they will adapt everything for him in the classroom. They'll adapt his chair with some kind of foot rest, so his feet will touch "floor". They'll teach him how to climb up into his chair on his own. He'll learn how to wash his hands at the sink, and they'll adapt that situation for him so he can do it himself. He'll learn to recognize his name, and how to hang up his backpack on his hook by his name. The help will be there for him whenever he needs it; but the goals will be to equip him to do what he needs to on his own if at all possible. Speaking of his backpack, I found the perfect one. This was kind of a big deal to me. I know he doesn't care, but I did. A lot. And when I say perfect, I mean ridiculously so! (Pictures to come. My camera is dead.)

It has been cool to see God's hand in this process of transition. More often than not, it's been through the encouragement and affirmation of his OT; but it's also come through some big deal kinds of things, too. We discovered that all but 1 of the van drivers are grandpas! They call the kids in their vans their buddies. Some of them decorate the insides of their vans with colorful, seasonal stickers. They love what they do! [Does anyone else think that this is my dad's calling when they move to Omaha?] I also met one of the school secretaries when she brought a van out to see how Judah's rear-facing car seat would work. It didn't. Long story short, he is now forward-facing! WOOT WOOT! That wonderful woman took 30 minutes to listen to me and encourage me. She allowed me to cry (I told you it's happened a lot recently) and then totally affirmed me and shared from her own experiences as a mom with a special son, now grown. That was amazing for me, and I know God did that. The biggest thing for me is who God assigned to be Judah's teacher. We know her family through CCS, because her dad served as the president of the school board for quite awhile. She grew up going to CCS. She loves Jesus! She's going to be wonderful for Judah this year, I know it. 

This has been long. Thanks for sticking with me. With Judah. Although, he's super easy to stick with. It's that man-sized charm squeezed into that little boy body. He's irresistible.

One more thing. If you happen to see me out and about tomorrow morning, don't be alarmed by my red, puffy eyes, or the paper bag I'll be desperately clinging to. That will just mean that I was actually able to drop Judah off for his 1st morning of summer preschool. If you have the courage to actually come near me in such a condition, just calmly put your hand on my arm and say, "Look, Honey, you're growing!" 

Maybe someday "change" won't be a 4-letter word to me. Maybe it'll just be a word. 

Saturday, April 21, 2012

Judah, Judah, Judah

The house is quiet. That would mean a lot more to you if you had been here 20 minutes ago, before Jared & my brother took our 6 oldest kids (the 2 "babies" are napping) to the park. It's a whirlwind of activity when all 8 are awake and playing; but we're having a good time together, and before I know it they'll be all packed up and backing out the driveway to go home. I thought I'd better use these few minutes I have to myself to get a few thoughts and happy tidings down.

I wish each of you could spend some time with Judah. It's amazing to me how much he's growing and changing; how much he's picking up on and learning as we and his early intervention team work with him. He's a phenomenal little boy! Such a joy to be around. So affectionate. So laid back. So curious and mischievous.  So opinionated...and yet so go-with-the-flow. So loving and compassionate. So determined and driven. I had no idea how God was going to bless and enrich our lives through Judah. Anyway, on to his many new achievements! He's become much more communicative in the last several weeks. He's initiating sign language and responding with it consistently and without being prompted. He's saying "more", "up", and "eye". I LOVE hearing him say words! No one else would recognize them as those words; but I know all the cognition and skill that goes into being able to voice something specific, so every time he says something I can't help but grin from ear to ear and cheer him on! He just underwent testing through his early intervention program because he's turning 3 and will transition into a new program. His gross motor skills are the most delayed, landing anywhere from 10 mo. to 14 mo. But he's always improving, and his fine motor and cognitive skills are not quite as delayed. And really, who cares? OK, every once in a great while it's hard to see what his peers are doing...but really, it's OK. He's amazing all by himself, and he's achieved much more than some people ever thought he would. He's standing! He can stand himself up without holding on to anything else, and balance for 3-4 seconds. That's HUGE! He's cruising along the whole length of the couch! He's climbing up and down from the ottoman! He's taking steps with us! He's met all but ONE of his goals we & his team set for him just 6 months ago! It seems like he's almost always doing something new!

We're really excited about Judah participating in "summer school" for 4 weeks in June & July. It's a special ed. class for 3 yr. olds that meets twice a week for 1 1/2 hrs. It's basically a prep. for pre-school...which we haven't decided about one way or another yet. I was adamant that he NOT go to pre-school, but...I might change my mind. That's really for another post. Judah is just so social, and we're excited about the opportunity he would have to be with other kids like him and receive his services with them at school. He would even get to ride the "special" bus. Speaking of which... I had this idea in my mind that Judah riding that bus was going to be so cute. The other day I pulled up to an intersection and stopped right next to the LaVista/Ralston Special Services bus. There it was. Handicapped sign on the bumper. Special seats inside. "Special Services" on the side. I called my mom and broke down. It really hit me that my kid was going to be on that bus. The bus that mean, "normal" kids make fun of. The bus for handicapped kids. The bus that no parent ever says, "Hey, sign us up! We'll take a seat in the front." It hit me again that Judah will probably never have a normal school experience. He'll never have the privilege of enjoying a Christian education like my other kids do. He'll be one of the kids that gets pointed out or labeled by the "normal" kids. These are things I almost never think about. I love Judah so much - I'm so proud of him and so thankful he's mine - that I don't get caught up in what will be or what is coming. But sometimes... Sometimes I'm reminded and faced anew with the reality that Judah is different and will always need to be treated that way. It's hard, because this was another reminder that grief, in varying degrees, will always be a part of my life. It's like singing for the 1000th time a worship song that praises God as Healer, and sobbing suddenly because that 1000th time it reaches something deep inside that's still hurting.

Enough about that.

We saw Judah's endocrinologist this week. Judah grew another 1/2 inch in 3 months and graduated from the length measurement to the height measurement! He can now stand (read: I hold his feet and legs against the measuring stick & the doctor holds his head) to be measured! He didn't gain any weight, though. I think mostly because he's moving around so much more; and it's hard to add avocado and sour cream to the table food he's eating. How do you put avocado on cut up pizza? I made him his own batch of snickerdoodles - 90 calories per cookie - and he gets to snack on those during the day. Lucky boy:) His peanut allergy makes finding appropriate store bought, processed foods a challenge. Homemade is better anyway. He's drinking about 8 oz. a day, doing amazingly well on the nectar thickness liquids. Every oz. he drinks on his own is an oz. closer to saying good-bye to that button. My guess is that it will be another 2-3 yrs. before we can take it out and leave it out, but at least there's light at the end of the tunnel!

Pray for Jared and I as we make the decision about pre-school for Judah. My concern is his health. I'll be talking to his pediatrician about the possibility of sending Judah just 2 mornings a week, rather than 4, so he can be with his peers and receive services there. I'm really anxious about the whole transition that happens at age 3 into the new special services program. I'm nervous that I'll be an inadequate advocate for him, or that I'll forget something, miss something, drop the ball on something. He has so much potential, so much promise, and I want to see him succeed and live his life to his absolute fullest capacity! It's a scary, daunting thing to know that a lot of that rests on my shoulders as his #1 advocate. When I hear myself say that I realize that I need to be going to the Lord with all of this. HE is Judah's #1 advocate, and mine, and HE is 100% adequate - MORE THAN SUFFICIENT - all of the time!

That's all I have time for now.

Tuesday, March 13, 2012

Neither

When will I learn that there is never a simple, black-and-white answer or outcome when it comes to my darling little stinker? He is no longer that naive, innocent little person who has no idea what's coming or what to expect during a test. He is not so trusting anymore. Now...he knows. The test was completely inconclusive, because Judah was completely uncooperative. The test didn't even officially happen. I guess that's better than a fail, but frustrating all the same. He'll have to start seeing the Speech Therapist at Childrens again (good thing we like her so much!) for a little while so we can start "trialing" him. We'll gradually start thinning his liquids and watch for signs of aspiration. I have no idea how long a process like this takes, but I'm still optimistic. I thinned his water at lunch today and he drank it like he's been drinking that consistency forever. Not a single sputter. That's definitely a good sign!

In spite of the fact that he didn't do a single thing that he was supposed to today, he still got to pick a prize out of the treasure chest...of course:) I love watching him do this, because to me it's such a normal, big boy thing to do. Just like any other 2 1/2 yr. old! After much deliberation, he came home with a bath book.

Thanks for praying!
Today is a big, and potentially life-changing, day for Judah. He has another diglutition (swallow study) this morning. I'm nervous about it, because the results of this test today come with long term ramifications. If he fails - meaning he still aspirates any kind of thin liquids - then he has to stay on a thickened liquid diet. That means he continues to drink veeery little fluids on his own, and the G button becomes much more permanent than it is now. Granted, Judah does have a tendency to surprise me; however, this is a road he's been on for a long time, so unless there is drastic change today I don't see any drastic progress in his near future.

If he passes - meaning he doesn't aspirate anything - then he gets to start over in this whole liquids department. That would be a VERY GOOD thing! He would be able to drink any kind of liquid without the thickening agent in it...which means he could drink in a completely new-to-him way...which means he would steadily learn to drink more and more and more in a day...which means he would be taking steps to becoming independent of that button! I don't even want to think about how wonderful and freeing that would be for him, because if it doesn't happen it will be that much more disappointing. I'm cautiously optimistic this morning. Judah has gotten so much stronger all around. He's eating all kinds of foods - different thicknesses, textures, finger foods - so I'm guessing that the muscles and coordination involved in swallowing have also gotten way stronger and have significantly matured. YAY! I would appreciate you all praying for the details involved in this...and my heart that might be dealing with significant disappointment today.

Judah is almost completely recovered from eye surgery. He has 3 stitches yet to dissolve, but his ointment is gone and the scars are already fading. And let me just say, I thought he was into everything before; but now he's really into everything! He's getting more frustrated with me, because I'm saying no more, because he's seeing things and manipulating with 2 hands things that he couldn't or didn't before. It's a learning experience for both of us, but it's GREAT for him!

Judah graduated to the table yesterday! He's been in a booster/highchair since he was a baby; but I decided that it was time to get rid of the tray and move to a booster seat at the table. He looks so cute sitting at the table, and now he can be with the rest of us. He knows he's big stuff, too:) 


Tuesday, February 28, 2012

My little Mr. BIG

Judah has made it a habit recently of blowing past my expectations and saying in myriad ways, "Mom, you underestimate me!" I still want to treat him like a baby. He is my baby, being the youngest; but I too often treat him like a baby-baby. He's showing me that he understands just about every word that comes out of my mouth. So what if he can't speak? He knows. He's attempting things physically that I didn't think he could. He's imitating his siblings and trying new things all the time. He's way smarter than he gets credit for...and sadly, I'm to blame for much of that. I get stuck in a certain mindset and I miss things. I'm embarrassed to admit that in just the last few weeks I've started talking to him like he's a regular 2 1/2 yr. old kid, assuming that he absolutely can understand everything I say; and I have not been disappointed by his responses and attempts to communicate in creative ways. He's a rock star.

All that to say, we decided it was time to give Judah a BIG boy bed! Jared built him one to match Ezra's, but Judah's sits on the floor. Eventually, when he's able to get in and out, we'll mount his to the wall, too; but for now this is perfect. He's spent 2 nights and 2 nap times in his new bed, and it's the cutest thing I've ever seen! He's so tiny in there! He stays put and snuggles in to go to sleep. And he grins from ear to ear every time we make a big deal about his new big boy bed. I love that he's in a big bed, because now Jared and I can lie down with him like we do with our other kids sometimes. I just can't believe how quickly he's suddenly growing up!







His recovery is going really well. Every day there's less bruising, and the swelling is gone! He's looking more and more like his new self. I was looking at some pictures from last summer, and there is such a stark contrast between then and now. He looks older, more alert and aware, more like his peers, awake (no more comments about my wide awake boy looking like he's so tired or needs a nap or just woke up - ugh)! All of a sudden he has these big, beautiful eyes! And he makes this face. He makes a little "o" with his mouth and says, "Ooooo". With his sparkling, round eyes he looks like the cutest little hoot owl. We see the specialist today, and I expect nothing but good things. We also get to go down to just 5 times a day for 2 days with the ointment. Then 4 times, then 3...we're almost there! Judah is doing really well with that now, too. He's resigned himself to the fact that it has to happen.

While I'm thinking about it, I should list some of his new accomplishments:

- He signs "Daddy", "Play", and "Shoe"
- He says "All Done!"
- He's putting puzzle pieces together
- He squats on his feet for a couple seconds at a time, trying to stand
- He climbs stairs
- He loves cleaning his tray with a wash cloth
- He is on his feet all the time! *However, his ankles are buckling again. He's being fitted for new braces    
  this week.
- He loves his new OT, is getting used to the rest of his new team, and has made the transition to a new
  team really well! (Better than his Mama...naturally.)