Wednesday, March 24, 2010

Speaking of...

...God's perfect provision... I can't believe I forgot to put in my list the card that came in the mail with a gift card to our favorite restaurant - Chili's!! Huge blessing:)

I also just wanted to do a tiny Judah update. Yesterday he weighed 13 lb. 11 oz. He's gaining weight a little more quickly now that we are using the feeding pump; however, I fear that my hopes of being in size 3-6 mo. by his birthday will not be realized. Oh well. The growth hormone will take care of that soon enough:) Judah also reached his left toes yesterday - finally! Very exciting, since his left side is considerably weaker than his right. And he's so got that rolling from his tummy to his back thing down! It is so fun to play with him on the floor and see him move around more!

Today has been a big day for me. I mentioned that I have been struggling quite a bit lately. A lot of it has revolved around feeling exhausted, worn out, lonely on this journey, and needing a break. Seems like everyone around us has opportunity to get away and refresh (well, even Jared will have a director's overnight in April), but I have not had that chance. I've been running on empty, feeling close to...a very ugly breakdown of some kind. Jared and I have been hoping to get an overnight for our anniversary in June, but that's still months away. We're going to WI next week, and I'm thrilled about that, but Jared won't be with us for most of that visit. He's been asking me what a time of refreshment would like for me. What would fill me up, encourage me, allow me to feel rested, etc. Other than a week away at some resort on a beach, I didn't know. Until this morning. I got out of the shower thinking about it, and all of a sudden it hit me. Time with my cousin would do that for me. I texted Jared right away: "I want to go see my cousin Amy." I thought that he would respond something like, "Ya that would be great. I wish I could make that happen for you." Or "Let's see if we can get down there over the summer." He shocked me when he called a half-hour later to tell me that he found a cheap ticket, and did I want to go this Saturday - Tuesday. WHAT?! Long story short, Judah and I are leavin' on a jet plane! I'm nervous about the layover and having to feed Judah, cart around all his "stuff" plus my pump, and actually pump. Don't know how it's going to go, but I do know the time in OK is so worth it! A big thanks to my wonderful cousin and her wonderful husband for being equally spontaneous!!

The other reason that today is so big for me is because I officially started weaning myself off the pump. Wow, it actually pains me to say that "out loud". Putting it here makes it real. As thoroughly as I hate pumping, it is so hard for me to give it up. I'm producing so little...but I still want to keep that tiny bit going...just to be able to give him something! It's also a pride thing. Ya know, look at what I did for a year for my baby. I need to remember that it's only by God's grace, and His enabling that I could do this for Judah for these 9 1/2 months. It's really God that provided this nourishment for him. But as Judah's mom, it's really hard to let this go. Ok, now the tears come. I have to face all over again that I couldn't breastfeed him...and now this chapter is coming to a close, too. Before I was ready. I mean, I've been ready to be done pumping physically and mentally for...months. But emotionally... *sigh* It's hard being Judah's mom. I love him so much. Ok, I know that weaning is the right decision, it's a good decision for the rest of my family, and it's the decision that God knew I would come to on this day when Judah was born and I pumped for the very first time. He had these days numbered, and just as He provided this special nourishment for Judah, He will continue to provide everything he needs.

Lord, I just need extra grace this first day of letting go. And thank You for my other kids that bring me so much joy...and distract me sometimes from these hard things by asking for stories:)

Tuesday, March 23, 2010

God's Perfect Provision

I've been struggling emotionally lately. A lot. I won't go into detail now - that's another post for another time - but I wanted to put down what has really struck me during these last few weeks that have been so tough.

God knows what I need better than I do, and He graciously and abundantly provides.

Lunch at home with a best friend.
A week with a "long lost" cousin who blessed me by spending quality time with my kids, and helped Jared get started on a time-consuming house project.
An unexpected couple of hours with one of our favorite people driving through Omaha; drinking coffee, talking, laughing, reconnecting.
A night out at our friends' house eating, playing games, and laughing at the ridiculous:)

All of these things were unexpected gifts that pointed me to the goodness of God and His gracious provision. But last night something happened that really hit it home for me. We were at CCS for the kick-off meeting for the annual Walk-A-Thon event. I had the honor of sharing a short testimony of why CCS has become such an important and valuable part of our lives and family. But, actually, that's not even the cool thing. I mean, it was very cool, but the really cool thing happened after the meeting. I went to ask a question of the guy that had come to talk to us about fundraising. As he was answering my question, Jared came over to join us, and then we basically began like a 30 minute conversation! This man graciously gave us his time and attention, even though there were probably others who would have liked to meet him. So generous. Because of my testimony, he started asking questions about Judah. By the end of our time with him, he wanted to be a part of our "prayer team" for Judah, and he wanted to involve his 4 daughters as well. I was floored! He's got Judah's blog address now:) Not only was this a huge encouragement and blessing to us, but another example of how amazing God and the Body of Christ is. And when I say amazing, I mean A-MA-ZING. God knew that my heart needed this kind of caring attention, and we always need more prayer! And being a part of the Body of Christ means that we're family and we can function as such, even when we've only just met. Sitting here right now I'm actually a little overwhelmed by the intimate care that God invests in me and my family. He is so into details!

So, the struggle remains, but God is using His people to carry me through each day.

Friday, March 19, 2010

Fancy Toys?

Who needs 'em when you have this kind of free entertainment at your fingertips?
video

HE DID IT!!!

video

Judah surprised me today when I was working/playing with him on the floor. I helped him roll to his tummy & then left him in that position for a minute to get some good exercise. All of a sudden he was rolling over! What a gift & what an accomplishment:)

GOD.IS.GOOD.

Monday, March 15, 2010

News Flash!

I got 3 loads of laundry completely done in less than 3 hours this morning! An entire load of towels was dry in 37 minutes! I mean, my laundry was done by noon!! Wahoo! I am so loving this new laundry situation:)

In other news...

I got a call from a Pfizer rep. today...as in, the huge drug company. They got what they needed from Judah's endocrinologist; and as part of their services, the next step is them contacting the insurance company directly to talk about benefits. Their services also include the pen-type device used to administer the drugs and in-home nurse training. So...I guess this is really happening. I'm not really sure how I feel about that today.

*So I just got off the phone with the rep. again. She said she would call me back after contacting the insurance co. and she wasn't kidding! That was less than 20 minutes! Anyway, official approval will take up to 30 days, but per Judah's doctor's recommendation, he is entering an interim program. Pfizer will send us a 30 day supply of the drug, the "pen", and set up the nurse visit now! He can then start the therapy right away while we wait for insurance approval. So much for a month to get used to the idea! I'm kind of shocked a little bit.

**Well, I just got off the phone with the rep...again. After reviewing her information with her manager, she discovered that as of April 1, Medicaid will no longer be covering the specific medication manufactured by Pfizer. She said that Judah's diagnosis (Panhypopituitarism with Growth Hormone Deficiency) is covered and he will absolutely get the medication he needs, but we now have to go through a different manufacturer that will provide a different medication...that is virtually the same. Could be a couple weeks before I hear from the new one, and she's not sure if they will have an interim program. Ok fine. As long as an official approval is just a formality...at least we don't have to wonder if we'll have to jump through unforseen hoops to get him approved. Regardless, I'm thankful that there is a treatment available to him for this particular aspect of his diagnosis:)

Judah got a feeding pump on Saturday. It's kinda funny. I used to go on nursing visits with my mom when I was younger & she was still in home-care. Now I'm on the other end of it. I remember my mom doing for others some of the same things these nurses do for us. Since Judah has been home we've had 3 nurse visits, and they've all been good. [Props to Childrens Home Healthcare:)] Anyway, the pump sure makes life easier, but I'm still concerned & frustrated that Judah has gone so far backwards in the eating department. He's only taking up to 4 oz. orally a day. We're going back to see the "feeding people" at Childrens again on Wednesday. We'll see...

Finally, we have a visitor this week! Jared's cousin Ryan came all the way from Phoenix to bless us! He's here to play with the kids, help us with stuff around the house, see what Jared does, and do anything else he can to encourage us! He came in last night, and already we've succeeded in keeping him pretty busy. Washing dishes this morning, playing checkers, NERF ping pong, Memory, building a fort, and now prepping our living room for painting with Jared:) (Which means that I not only got laundry done, but also dusting, sweeping, & straightening up!) I'm thrilled to have him here, and love watching my kids get to know & love another member of our family that we don't get to see often. The 3 warmed up to him right away, even giving him hugs when they met! Definitely a cousin connection there:) So, thanks, Ryan! And thank You, Jesus!!

Thursday, March 11, 2010

Skills Assessment III

I got the results of Judah's skills assessment from his OT and PT on Wednesday when they came for therapy. Judah's fine motor skills are around 5 months, but his gross motor skills are around 3-4 months. I was happy with the fine motor assessment and not at all surprised by the gross motor. I'm thrilled with all the new things he's doing, every small step he's taking forward; but it's still hard to hear official confirmation that he's delayed. Thankfully, his teacher & therapists are always so encouraging, and are some of his biggest cheerleaders! They have been a very large, positive part of this journey. They make a huge difference in Judah's life, but they have also been a fun, positive part of Ezra's & Lydia's lives as they work with these 2 and show them how to play and interact with Judah purposefully.

Judah has finally gotten one step closer to rolling over, too! As of March 2 he can make it onto his tummy, but just doesn't have the strength/skill yet to pull that little arm out. He's so, so close!!


video

Legs, Lunch, Laughter, & Laundry

[Admittedly, this title is a stretch, but it'll work in a pinch!]


Legs...oh, those chunky little legs! I just love squeezing and tickling them! I do not love "shooting" them. Yesterday I took Judah to the endo clinic for a nurse injection. Super on-top-of-it mom that I am, however, I left the testosterone at home...again! (Yes, I did this in January, too.) The nurse met with me, went over how to give the injection, and sent me on my not-so-merry way. I was so frustrated with myself! Aargh! After supper it was time. As icky as giving an injection to my darling boy is, at least I have the "Older Sibling Advantage"! I got Judah all ready & then called over the other 3. By strategically placing them all by Judah's head and then having them talk and sing to him, I was able to give Judah his shot without him even knowing I was doing it! It was a win-win all around! The 3 older ones felt good about helping Judah, Judah didn't feel any discomfort & got to be entertained, and I got a confidence boost:) Thanks, Lord!

Lunch...isn't going so well. Actually, it's all of Judah's meals that aren't going so well. He is taking in fewer ounces orally each day, and I am spending more and more time feeding him through his tube. I'm waiting for the specialist from Childrens to call me back so I can ask her about possibly getting a pump for him to make the tube feeding easier for us. I also want to make sure that this progression to more and more from the tube and less in the mouth is normal.

Laughter...is a sure fire way for a baby to entertain a class of 13 2nd graders, and Judah nailed it! Eli got to be the Student of the Week in his class this week, and yesterday was his day to share with his class the poster he filled out about himself, and bring show-and-tell. That sweet boy wanted to show off his baby brother! Eli did a great job of telling his class all about Judah's feeding tube, when he has to get shots at home, and what Eli loves to do with him. (I loved that everything Eli described that needed to be done with his feeding tube and giving injections was done with a "we"!) Judah did his part by cracking up at Eli "on cue"! My favorite question at the end came from a little boy that asked, "Is that pink spot on his hand where they cut his finger off?!" Eli enthusiastically replied, "Ya! He had an extra finger on each hand, and they cut them both off!"

Laundry...has been the biggest "chore" that has consistently gotten the better of me. I have never minded it too much, but since Judah came home I have really struggled to stay on top of it. Running around to various appointments and having to do "extras" at home with Judah, as well as pumping, has definitely made getting this task done an extra challenge. I have dreamed of having a front loading washer & dryer for several years, but the timing has never been right. I knew that they would make laundry days easier in several ways, and I knew that would be a big help around here! I was sure it would happen someday, and I couldn't wait, but that someday was yet to be. Enter an amazing, gracious God and a wonderful, self-sacrificing husband. God provided the finances needed to buy a brand new washer & dryer, and my husband made it happen! My new "toys" were delivered just this morning, and I have never been more excited about an appliance...or anything else for the home! I am so thankful - beyond words - that God has seen fit to give me these gifts!

Tuesday, March 9, 2010

Yesterday was unexpected. Judah's endocrine appointment was much longer and more involved than I anticipated, and I got a huge boost from his endocrinologist that totally took me by surprise!! I impressed him! I impressed him! I impressed him! The doctor that is so highly intelligent and perfectionistic...I impressed him! Throughout the course of the hour that we were there he told me 4 times that I was a good mom, and couldn't get over how thoroughly I care for Judah in some ways. He blew me away! I'm doing what I know I need to do for Judah, and I often feel inadequate, or like I should be doing more; but this doctor...he gave me wings yesterday! To know that I made such an impression on him, and to have his verbal affirmation made me feel...lighter and wonderful and sooo good. Unbelievable:)

This appointment was somewhat of a turning point for Judah. Not only did the doctor order 3 more injections of testosterone, he also started the process to get Judah approved for growth hormone replacement therapy. Judah's length is falling farther and farther off the growth curve. In 9 months he's only grown about 3 inches. With his diagnosis of PanHypopit., the MRI, thorough charting, and a bone age (kids with growth hormone deficiency have bones that are much "younger" than their actual age, so this is a series of x-rays taken of one side of the body to determine the "age" of the bones) done yesterday, his doctor is confident that the process of getting approval from the insurance company will be a smooth one. We should be starting growth hormone in about a month. This is a very good thing, and without it, Judah really can't survive; however, it's a daily injection for life. [Interesting fact about growth hormone: it's produced & works in your body at night. So, every time you think your kids look bigger in the morning than they did the night before, you're actually right!!] I'm having a hard time wrapping my mind around the fact that in a month or so I'm going to start injecting my baby with this drug every night. I've had to give him an injection before, and it went really well, but...every night?!?! This is a big deal. This has lasting repercussions. This is going to be really hard. I'm really excited that Judah will finally be moving forward and we'll finally see him grow; but the means to that end makes me feel sick to my stomach. Ugh. It's just another one of those emotional dichotomies that have become so common in my life as Judah's mom.

The ng feedings are going ok. I'm still frustrated with the whole situation more often than not. I don't enjoy feeding Judah. That's so hard for me. Feeding, nurturing, nourishing my babies has always brought me so much joy and contentment - I have loved it! - but to have to let go of breastfeeding, dealing with the cleft issues, and now on to the ng tube again...it's just complicated and frustrating! I'm so thankful that this is temporary. It makes me even more eager for his palate repair. My biggest prayer has become that that repair will also take care of the aspirating, and then we can start over with normal fluids and real food!

We had a follow-up with the pediatrician today to discuss the ng and what's changed in the last few weeks. He told me God gave Judah a great mom. Wow. Two doctors in as many days. God knows I've been running on empty, and He's nourishing me emotionally through Judah's doctors. I did not see that coming!

Speaking of running on empty... I realized today that Judah has had at least 3 appointments a week, every week, since January. Including 2 (blessedly short) hospitalizations. No wonder I feel so weary and tired. It's hard keeping up with all of this. What in the world is all this gonna look like when Judah's 2...or 3...or 5? How does a little kid like that handle stuff like this? Lord, You should probably just come back and take us all Home.

It's been a lot lately. A lot to handle, to digest, to roll with. But I still get to have Judah. And I still get to have my Buddy, my Little Man, and my Merry Sunshine. I still have my best friend. I still have a Savior to carry me. Sometimes I really wish that God would make this all go away. Heal Judah. Change the story that He's writing for him, for me, for our family. I wish that right now; but I choose to cling to the promises that God's grace is sufficient, He has given me everything I need to thrive in this life that He's called me to, He loves me passionately, and He is enough.

Thursday, March 4, 2010

The Champ in Action II

Nobody is funnier than a big brother!!

video

The Champ in Action I

February 8
video

Wednesday, March 3, 2010

Skills Assessment II

Judah had his second skills assessment today, done by his teacher. It went really well, and it was so fun for me to see him interacting and playing with her & her partner in different ways! She's going to write up a report for me, but based on what she saw today, and what we discussed about him, she said that cognitively and socially he's about 5 months! Yay! She saw him 2 weeks ago, and said that even since then she saw new things today, and he's farther along than she thought he would be:) She's excited about where he's at, and she really encouraged me as well! Way to go Champ!!

(He must be so smart because of all the reading his 3 yr. old sister does for him!)

Judah's New Look

I can predict the future after all. Not in a good way, because the NG tube is not what I wanted, but at least it wasn't a surprise. And, as usual, Judah is handling it better than I! That jolly boy just has no idea that he's sick! The feed eval. didn't go well at all. So, until further notice, we need to give him 30 min. to eat about 6 oz. (after 30 min. baby burns more calories than he's taking in). Whatever he doesn't take in that time he gets via his lovely new accessory. (Who says guys can't accessorize?) He'll have another swallow study done right after his palate surgery to determine whether or not he's still aspirating; until then at least we'll be thickening his liquids and using the NG...unless he gets stronger & takes all he needs orally. I think I'll call the pulmonologist to see if he's thinking of doing a scope or not. What if the problem is anatomical or fixable somehow, other than just being a matter of swallow coordination, and he could get the aspiration problem corrected before June? And does any doctor even know? That's one of the things that is so frustrating about this whole situation. There are no easy answers, no one doctor knows everything or even a fraction of it, and there isn't one solution. I feel like between the 12 or 15 doctors we see for all the diagnoses and health problems, they're all just trouble shooting. It's one thing after another. One doc. says this, another one says that, one wants a weight every week, one wants one every other week, one thinks this is fine, another one thinks it's a problem, and on and on and on. I'm sorry. I know my attitude stinks right now, but it is what it is. I'm frustrated. I want answers and solutions and progress for my son, and it's nowhere in sight right now. I know in my head we'll get passed this, but I feel somewhat buried in "medicalness" right now. And now I look up and see my sweet, beautiful boy sleeping on his boppy. Peaceful. Content. Oblivious. He's such a precious gift. He doesn't deserve this.


So that's that for right now. I did ask one of the doctor's nurses if I could get my own scale and do all this weighing from home. Doc's on vacation right now, so I don't know who she asked, but they basically said no. I fought for this one. She'll talk to the doc. on Monday and I can call on Tues. I'm determined not to back down. A trip to the hospital every week just to get weighed? Seriously? Seriously. I don't think so.


Practically speaking, we need wisdom. Lord, I NEED WISDOM!!! These doctors need wisdom! And not the kind that will come from their own knowledge or experience; the kind that only comes from You. Jared & I need wisdom to know what questions to keep asking, what decisions to make, how best to advocate for Judah, what to respectfully fight and what to graciously concede. Lord, I need You here. I can't do this. I just can't. I look at Judah and see this amazing little person that You knit together to be just so, and I look at me and see inadequacy and fear. Phil. 4:13. Ok, good point. 2 Cor. 12:9. Yes, another excellent reminder. Right, I get it. I'm not alone, and only in my weakness and dependency on You will You give me Your strength and enable me to do what You have called me to. *sigh* Christ in me can do this. Ok. I think I can move on now.

Tuesday, March 2, 2010

The Last Week...

Judah's therapy went really well last week. It was fun even! We met the PT, and she and his OT did a skills assessment to determine what stage of development he's in. Judah handled everything really well. They made him work so hard, but he smiled right through it, even when he was breathing hard and pooped out at the end. What a sweetheart! Haven't gotten the results of their assessments yet, but we did determine that it's time to include regular physical therapy from the PT. Starting this week Judah will receive pt once a week, included in his regular ot/teacher visits. I feel good about that, and am eager to see how the extra visits will help him progress.

Sunday... The music, oh the music! Ya know, I always leave church with nuggets of truth, wisdom, and/or challenge from the message, but it's really the music that ministers and speaks to my heart the most. Every week I am overwhelmed with a sense of gratitude and a renewed spirit because of the re-focus I get from the songs that we sing. The gentle and gracious reminder the Holy Spirit impresses on my heart that regardless of what my week holds, everything in this life is for Him and from Him, and nothing gets to me without first passing through His loving hands...be it trial or blessing. He's in control and all is for His glory. These are just a few snippets from last Sunday:

**Trusting only in Thy merit,
Would I seek Thy face;
Heal my wounded, broken spirit,
Save me by Thy grace.
Thou the spring of all my comfort,
More than life to me,
Whom have I on earth beside Thee,
Whom in Heav'n but Thee.
-"Pass Me Not, O Gentle Savior", Bart Millard
**There is none more holy, great, and mighty
No one like our God
Son of God our greatest prize
we crown You, we crown You
King of glory, Jesus Christ
-"We Crown You", Steve Fee & Eddie Kirkland
**I'm giving You my heart, and all that is within
I lay it all down for the sake of You my King
I'm giving You my dreams, I'm laying down my rights
I'm giving up my pride for the promise of new life
And I surrender all to You, all to You
And I surrender all to You, all to You
I'm singing You this song, I'm waiting at the cross
And all the world holds dear, I count it all as loss
For the sake of knowing You, for the glory of Your name
To know the lasting joy, even sharing in Your pain
-"Surrender", Lincoln Brewster
Seriously, how could words and truths like that not heal the soul?!
And today... Judah's feeding evaluation is this afternoon. It has not been a good week in the eating department. Feeding is a complete mess; Judah's volume, how much he's eating in a day, is way down; and it's so thick that I think he either gets tired from working hard to get it down, or he loses interest. I'm looking forward to going today. Hopefully they can tell me something encouraging. I won't be surprised, however, if they send us home with an NG tube & pump. That's obviously not what I want for Judah, but I'm concerned about & frustrated with this whole situation. I don't know what's best for him at this point, except that he gets all of the nutrition he needs! Gr. Seems like there's just never an easy answer when it comes to this little lion.
Remember: God is in control! Judah belongs to Him, and He cares about this. Ultimately, God is responsible for Judah, and He is his greatest advocate.