Wednesday, December 30, 2009

A Break

We're back in Wisconsin for the holidays, and while being "home" again usually doesn't offer much in the way of a break or vacation, it does provide a much needed break from doctor appointments! I did need to call in a couple meds over the weekend, but other than that I have been away from my phone and away from the many medical offices that have become way too familiar and routine! Thank the Lord for a reprieve!! A rest. A chance to pretend at least a little bit that Judah is just like any other 6 1/2 month between the eye patch, scar treatment, therapy play... Well, whatever. We're here and the doctors aren't!

Now for some play time with those other kiddos of mine that keep me laughing...!

Friday, December 18, 2009

Thank You Jesus!!

I am beyond happy to report that the lab work for Adrenal Hypoplasia Alpha 17-Hydroxylase came back NORMAL!!! That's right; Judah does NOT have this rare adrenal disease!! Praise the Lord! I was anticipating that this test would come back positive for the disease, so I can't even begin to describe my relief! I don't want to spell anything out because of the sensitivity of some of the markers of this disease, but if he did have this disease his body would not be able to respond to testosterone. Enough said. The nurse is ordering Judah's first dose of testosterone today, and he'll get that injection early next week! Among the obvious side effects of this hormone replacement are also possible overall growth and weight gain. Oddly enough Judah's growth hormone levels were elevated, but will be re-tested at the beginning of January. Thankfully, growth hormone replacement has been put on hold, and we'll see how Judah responds to his first 2 rounds of testosterone (given 4 weeks apart).

Thank You, thank You, thank You, Lord!!! I was so grieved by the possibility that there could be 3 diseases in that 1 tiny little body. God, I know You would have sustained us and given us the grace and strength to handle this and everything it would have meant for Judah; but I am so thankful that in Your sovereignty You have allowed Judah to live without this sickness.

To God be the Gory!

Thursday, December 17, 2009

Finally a day at home. No place to be but Eli's school at 3:20 to pick him up. No appointments; not even a call to a doctor's office or Walgreen's for a refill. A day like this doesn't happen often enough. The last 2 weeks have been especially hard. We've seen the insides of too many specialists' offices and have gotten to much new information, "possibilities", and "what ifs". It's been hard to deal with. The recap goes something like this:

The plastic surgeon's PA - the only one to give me good news...mostly. Judah's healing well from the surgery, and all his stitches have been removed. We just have to go back one more time to double check the incision on his left hand, because it's healing more slowly.

The endocrinologist - I don't even want to revisit this one. Adrenal Hypoplasia a possibility. Growth hormone injections a big possibility. Testosterone injections a possibility. A dysfunctional hypothalamus. Those are the "highlights".

The lab - Judah just happens to be as tough of a stick for draws as possible. The lab techs are really good, but only once has he had to be stuck just once. This time was no different. Check both arms, trying to find a vein for several minutes, stick one arm twice to try to get a draw, then stick his heel - twice - to get an obnoxious amount of blood for all the tests the endocrinologist needs to run.

Therapy - a definite highlight in the midst of all the doctor stuff. I love the 3 ladies that work with us. They oh and ah over Judah, making a big deal over the slightest bit of improvement! They encourage me in what I'm doing, and teach me new ways to help Judah. Just when I start feeling really discouraged about how far behind Judah is, these ladies come and by their attitudes and acceptance of Judah remind me that he's doing great for him, and that's all that matters. He's not any other baby. He's Judah, and he's doing just what he should be.

The pediatrician - 2 visits in 2 weeks. 11 lb. 2 oz., and 11 lb. 4 oz. nine days later. (I didn't mention to the nurse that he had a wet diaper.) Judah is bordering on "failure to thrive". That sounds so ridiculous to me because he's so happy and content. But he's not really growing. The current plan of action for the next month is to give him as much breast milk and solids as he'll take, and hopefully he'll gain a pound. If not, then the next step is to add a calorie booster of sorts to my milk. I'm praying that by that point he will have started growth hormone replacement therapy and will improve overall in weight and length. Even if we do have to add something to my milk, that's better than jumping right back to the NG tube. Not a possibility I'm a fan of...obviously.

The vision specialist - I forgot. I did get a bit of good news from him. And, actually, I like going to this doctor. He is gentle and kind and a gentleman. He shows a genuine interest in and concern for Judah beyond his vision problems. He's respectful to me and treats Judah with dignity. If I could, I would ask him to be my grandpa. (I miss having one.) Anyway, Judah continues to show some signs of improvement in the vertical movement of his eyes, and in his almost lazy eye. (It's not official that it is.) The patch is helping, so we'll keep up with that, 2 hours a day, for the next 6 weeks until we go back. The muscle weakness in that same eye is the same. The next course of treatment sometime in the not too distant future is an injection of Botox in the muscle to relax it, allowing his eye to freely and easily move to the center. Not sure how long that lasts, or how many injections there might be over time, but this treatment could help in preventing eye muscle surgery in the future.

Ok, so it that's not enough to process, I've been dealing with feelings of guilt lately, too. About almost everything. Not being a good friend to those around me. Not being adequate for Judah, i.e. not giving him the time in therapy that he needs, not being able to breastfeed him (that's a huge one that I refuse to talk about and deal with - still too painful). Not being the wife that Jared needs. The biggest guilt trip I've been on is because of my total failure in taking care of my family the way that I think I should be. Of course Jared has completely let me off the hook; he's been beyond gracious, understanding, and compassionate. My feelings remain, though. I feel like a disaster, a failure, an overwhelmed, not at all put together, disorganized, frazzled, tired, scatter-brained mess! We've had a hard couple of weeks. It's not always like this, and I know next week will be better. We're in a down phase or something. I just wish that knowing that made me feel better. I want to be handling all of this so much better. I want to be so way ahead of where I am. I want to be Super Mom! Although I'm beginning to wonder if she really exists.

On top of all of those feelings, I'm struggling to deal with the realities of Judah's pituitary disease, Panhypopituitarism. It's so...hidden and mysterious and complex and horrible. I don't understand it, and I can't keep up with it. I hate it. I hate that it effects every single aspect of my darling boy's little body. And I can't do a single thing about it. I'm helpless.

So, God hasn't really changed anything for me since the other day when I was feeling so weary of all of this. Who am I kidding? I still feel that way. No miracle healing or drug or good news. However, even though nothing has changed for us, I know that the same is true of Him; and that's comforting. He's the same. He's still all those things that I choose to believe are true. Everything His Word says about Him. He seems silent and far off right now. But I know He hasn't moved. He's still there, pursuing me and loving me...and Judah. He's with us at every appointment. There is peace in knowing these things. Hmmm, I really do miss my grandpa right now. I haven't missed him like this in years. He would've had a lot to say about God's goodness and faithfulness in regard to Judah. And he would have prayed like nobody else. I can only imagine how many times Judah's name (and mine) would have showed up in his prayer journals. Well now I miss Grandma. She's been gone for 20+ years, but I can picture her in my mind so clearly. She would have loooved Judah. All my kids, but there would have been a tenderness reserved for him I think.

Ezra's waiting to play the animal game. He's been more patient than any reasonable 4 1/2 yr old. And the pump awaits. Boo.

Tuesday, December 15, 2009


That's what I am. Weary.

4 medications in the morning...
1 in the afternoon...
2 at night...

5 doctor appointments or trips to the lab in 4 days last week...
3 doctor appointments plus therapy in 2 days this week...


Feeling overwhelmed...


I'm just tired of it all. I'm tired. God, I'm tired...and I want You to stop this. Just make it stop. It would be nothing for You to heal Judah. Just think it and it's done. Would healing Judah really alter some grand cosmic plan? Wouldn't it be worth it? You see him. You see how sick he is inside. I believe that it hurts You to see him hurt. So, just stop the hurt!

This is me today. Weary.

Tuesday, December 8, 2009


We also saw the pediatrician yesterday for Judah's 6 month wellness check. Overall, it was a good appointment...and we didn't have to go to the lab for anything! Judah finally got caught up on his vaccines, and I was able to talk to the doctor about a few things. I was concerned about the increase in Judah's spitting over the last month; I know that the acid coming up can be more harmful for Judah because of his cleft palate. So, he's now back on Lansoprazole (Prevacid), but I'm more relieved than anything. I know that, for now, that's a good decision for him. My prayer is that as he grows he'll grow right out of this reflux problem. Another thing we discussed was solids. I knew the dr. would be ready for me to start Judah, because of his slooow weight gain. I think Judah is ready, too. I'm just not sure I'm ready. It's a big step, and I started my other kids later. Again, though, I believe that this is a good decision for Judah. I'm so thankful that the Lord has enabled me to provide nourishment for him up to and beyond this point, as well, so that does make it a little bit easier to start him on something else, too. Let me just thank Jesus again for an uneventful check-up!!


I looked up that disease the endocrinologist told me about. I love google. And I hate google. At any rate the disease Judah is being tested for is a type of Adrenal Hyperplasia called 17 Aplha-Hydroxylase. Of course 17 is the rarest form of this disease (as far as I can tell from my reading). It's a defect in the gene for this particular enzyme. It's actually pretty fascinating, but I'd rather it be fascinating for someone else. Thank God for His grace to handle anything...


Judah had his lip stitches removed today!!! Ever since he had them removed he's been smiling and giggling like his old self. Makes me wonder just what they felt like for him. Next week we'll go in to have the stitches in his hands removed. Oh, I wish you could hear this! He's laughing at Ezra right now!! He's such a jolly little guy!

Monday, December 7, 2009

Return to Medical School

I have always known that Judah is special. Obviously. However, I think that when a specialist says multiple times that your baby is "special", "different", & "interesting", even to him (the specialist) that means that your baby is rrreeeaaalllyyy special. Like, on the fast track to being a medical marvel even. Well, that's what we got from the endocrinologist this morning. I took Judah in for his every-3-months follow-up and got some new information. In one sense, it's kinda like, "Ya, my baby really is fascinating & special", but in the other sense it's "Oh, my baby is actually sicker than I thought". That's where the return to "medical school" comes in. I find myself knowing information that I never wanted to know...again. Overall, Judah is still doing fine. Day-to-day he's healthy; his happy, content, laid back, beautiful, charming, darling little self. But his insides are so mixed up and complicated and...sick. I'll try to keep this relatively simple. I'm still having a hard time wrapping my mind around this new information, so we'll see how I do at explaining it. 1st is Judah's growth...or lack thereof. He's 11 lb. 2 oz. & only 21 1/2 in. long. tiny. He will most likely begin getting growth hormone injections within the next 3 months. The 2nd issue is a little more sensitive in nature. There's an extremely rare adrenal disease (his endocrinologist has actually never seen a case) that effects growth, etc. in the "personal area". He believes that Judah might have this disease. It revolves around some 17 enzyme something that his body might not be producing. I don't know much else about it, because I don't know if he has it. When I know for sure, I'll ask. At any rate, he's getting some special blood work done on Wed. morning to test for this disease. If he doesn't have this disease he'll be starting testosterone injections within the next 3 months. If he does...I'm not sure what happens next. The 3rd issue deals with another part of his brain. Judah has had 2 infections - ear and lower urinary tract. Each time he was totally non-symptomatic and it was a surprise that they were there. I've had floating around in my mind the thought that that's kind of odd. Infection with no fever, nothing? We talked about that today. Long story short, the dr. believes that Judah's hypothalamus isn't working. This part of the brain is actually above the pituitary and sends signals to it; the pituitary in turn sends signals to other parts of the body dot dot dot. The hypothalamus also basically tells your body to produce a fever to fight off infection/bacteria. Judah's body is not producing fevers. Practically speaking this means that whenever a doctor finds an infection and puts him on antibiotics I also have to up his steroid dose to help his body deal with the stress of being sick. (Normally a fever would clue me in to this and I would know to "stress dose" him; however, he's not getting a fever!) Long term, though, I have no idea what something like this means. And I'm ok with that for now. All of this other information is more than enough!

Everything else is going well. His recovery from surgery is going pretty smoothly. He's fussy and uncomfortable sometimes, but other than that there haven't been any problems. I can't believe we go in to get the stitches removed tomorrow!!

Thanks to everyone who has prayed or prays on a regular basis for this Little Lion...HIS Little Lion. God reminded me this morning that there's nothing wrong with Judah. He is exactly the little person that God made him to be. Created in His own image, designed to fit perfectly into our family. There is pain in this life, but God doesn't make mistakes. And a perfect eternity awaits!

Wednesday, December 2, 2009

From the Waiting Room 5

I am writing this from my living room. It's so good to be home! It's been a pretty incredible ride, and God's faithfulness has been evident throughout. Less than 24 hours after Judah came out of recovery we were taking him home! Not a single complication! Over night Judah did very well. He slept soundly and woke once to eat. There were several interruptions overnight, nurses doing vitals, a dose of pain medication, but he pretty much sailed right through! He's had a little more swelling around his stitches, a little bruising, but overall he's looking better. I'm excited to see him slowly heal over the next several days and weeks. His appetite is coming back little by between looong naps. He's still pretty tired. But he's home and he's doing great!

It's funny how each of my other kiddos have handled the last 30 hours or so. Praise the Lord for grandparents!! They saved my day by taking care of the kids while Jared & I were gone all day yesterday. And they were busy! Grandma & Lydia cleaned house (happy day), Gramps & Ezra played several games and put a puzzle together, lunch at McDonald's (of course), play time at 2 different play grounds (definitely a grandparent thing), craft time with Grandma, supper, and the evening & bedtime with Daddy. Ezra got a little sad when I said good night to him on the phone. Eli was already half asleep. And I'm pretty sure Lydia was more concerned about hearing a story than saying goodnight to Mommy! The fun (and funny) happened when we came home!

Eli: Eli actually got to come to the hospital with Daddy to come get us. [The surgeon rounded on Judah at 6:30 this morning, so we were all ready to go by 7:45!!] So, Jared & Eli picked us up "on the way" to school. Eli's whole face lit up as soon as he walked into Judah's room. He smiled ear to ear and came right over to me & Judah (who was in the sling). To his credit, Eli did give me a hug before he very gently & quietly oohed and aahed over his baby brother:) He was so proud to be a part of getting Judah out of the hospital. And he loooved that he got to sit by him in the backseat of Dad's car! The best part: when I took Judah out of the sling by the car, I let Eli get a good look at him before I put him in his car seat, and Judah gave him his first post-op smile! I found out later that yesterday Eli came home from school with a picture of Judah that his teacher (I think) had printed off the computer. He got to show his class the picture and they all prayed for Judah right away that morning. Now he's excited to take a picture of Judah so he can show his class what he looks like after his surgery! [By the way, anyone looking for the best Christian school around, I know where it it!!]

Ezra: My Little Man came to see us as soon as we walked in the door, but it was just for a quick "hello", and then he went back to whatever it was he was doing. However, later on he came to see me. He told me he had missed me. A few minutes later he wanted to do a puzzle with me. I needed to sit down at the table & pump, but told him I would love to do a puzzle with him there at the table. Grandpa offered to do it with him, because he had so much fun doing one with him yesterday. But Ezra looked at me and said, very sweetly and matter-of-factly, "I want to do a puzzle with you because I need to have some attention with you. I didn't see you all day! I need some attention with you!" I love that he was able to articulate that need so well. And it was just so darn cute!

Lydia: This little mommy completely disregarded her mommy! I walked in with Judah and she came running. "Where's Judah?" I picked her up to give her some lovins and tell her I missed her. All I got was "I missed Judah too!" She said "I love Judah so much" about 4 times over the next minute. I know she missed me, but she sure has a funny way of showing it;) She's been very careful & gentle with him, and has been very eager to help with any little thing!

We're all glad to be home together again. We're having a pretty quiet day. Judah's sleeping a lot. I've done a puzzle, played a game, cuddled. It's been nice. I can't wait for my bed tonight!!

Tuesday, December 1, 2009

From the Waiting Room 4

Cuddling in the CARES unit

All ready for surgery

Technically, I'm not in the hospital waiting room anymore. However, I am in God's waiting room, so to speak. Waiting to see how God will work and move in Judah's body over the next several weeks. Waiting for Judah's complete healing from these procedures. Waiting to see how God will continue to work and move in me...
That said... My beautiful little boy is sleeping soundly...still!
Going back to "Recovery"...
We got the call in the waiting room that he was ready to be moved upstairs to his room. A volunteer took us to a set of back elevators to meet him and go up together. As we were walking towards the elevators 2 nurses wheeled a little bed towards them, coming from a side hallway. I knew it was him when I saw his fuzzy hair sticking up from the bed:) And then seeing his face...his precious, sweet, adorable little face! I just can't get over that little face! Before today I couldn't understand how he could be as cute after surgery as he was before. I believed that he would be, but I just didn't know how that would be possible. The love that God instills in a mother's heart must be an overwhelmingly powerful thing, because the instant I saw him I was in love all over again. He was sleeping, but opened his eyes a little, responding to our voices, and then went back to sleep. Since then he's just been sleeping. However, even in sleep, he continues to charm the nurses here. They think he's so sweet and adorable, so laid back and easygoing. The best little patient. Well, obviously!

In his room with his new friend

Just Judah

I don't know what this recovery process will look like for Judah. I know it will be painful for him, and so for me, too; but I'm leaning on the Everlasting Arms to walk us through this stretch of road on Judah's journey, as He has each step of the way.


From the Waiting Room 3

Just got our update from Dr. C. (Not K. - oops!) Anyway, overall everything went well. Our little lion is full of surprises. His Eustachian tube doesn't work, because of the cleft in his soft palate, so his new tubes will function as a Eustachian. Hopefully no more fluid in his ears, and the ability to hear us clearly!! He also has a tiny, tiny ear canal in his left ear. The tube that he used in that ear will last for maybe 6-12 months. Prayer request: that it will last until it's time to correct Judah's palate so he can have new tubes and the repair in one shot (around Judah's 1st birthday). Also, it appeared that Judah may be at the very beginning of an ear infection in that ear. He cultured it and that will come back Thursday. We'll have a follow-up with Dr. C. in a couple weeks.

Now we just finished up with Judah's surgical nurse. She said he's in recovery and doing well so far. 30-45 minutes and he'll be in my arms. I can't wait! Seriously, I'm dying here. I have butterflies. I'm just so excited to see him! What a relief to know that it's over and he's done well. Thank You, Jesus!!!

Dr. B. let us know during his update that as long as Judah is handling clear liquids well he should be able to go home tomorrow. He'll come see Judah in the morning. Clear liquids for about 24 hours and then back to Mommy's special Judah-only brew:)

I'm very thankful for this amazing hospital and the staff to match. They are really incredible, and again I thank Jesus for putting us here in the heart of Omaha. And of course I thank Him for Judah...always.

Let the countdown to that first wonderful face-to-face begin!!

From the Waiting Room 2

As we sit here it's weird and sort of unsettling to think that Judah looks different. He'll never be the same. When we met with the surgeon before surgery he was very reassuring. I know he's right: I will re-bond with Judah and think he's so beautiful all over again. I will fall in love with each little face...however many there may be. But really, this is odd.

At 8:30 Dr. B. (the plastic surgeon) came out and gave us a great report...with a twist. He said his part with Judah's lip & fingers went very well, and his lip turned out beautifully. But the doctor who was going to do his tubes didn't show. A miscommunication between the different offices regarding scheduling, etc. Bummer. Things like this happen. I believe that God is in control, and that there is a reason. However, I am not looking forward to having to put Judah through all of this again just for a 2 minute procedure. Gr. BUT GOD...

God is funny. Not always funny ha-ha...but just funny. No sooner had Dr. B. left, than Judah's surgical nurse came to touch base with us again. She said just as they were going to be turning off everything to take Judah to recovery the other surgeon called and said he was on his way! Talk about being "in the nick of time". Still not sure where the miscommunication came in, but regardless of his schedule today, Dr. K. is on his way to put the tubes in Judah's ears. And the timing of his call was such that they could just keep Judah sleeping, waiting for him to get here. Thank You, Lord. You're amazing.

I can't wait to see Judah.....

From the Waiting Room 1

I'm sitting in the waiting room. The sun is coming up. It's still pretty quiet around here. We've had our first update from the surgical nurse - all good. Cinnamon Oatmeal and bagel from the "pantry" in the CARES (surgical) unit. Now I have time to think. This is all kind of surreal...and weird.....

All day yesterday I just wanted to stare at Judah. See every face he makes, or made, hold his hands. I was trying to prepare myself to let go, and yet I couldn't imagine actually doing it. As the day wore on I felt slowly but increasingly more desperate to remember every tiny feature, every face he could possibly make. It was only by the grace of God that I got a good night's sleep. I also praise the Lord that Judah woke up at the perfect time to eat his "last meal" before surgery. Another evidence to me that God truly is into details.

This morning I hated to wake him up. He was sleeping so peacefully. Oh, that little face. I had to give him a bath, making sure that his hands were especially clean. Then cuddles and kisses, and a time of prayer with Daddy, too, before it was time to buckle him in his car seat. As silly as this might sound, I've had this "this is the last time..." mentality for the last 12 hours. The last time I'll see that face, or that smile, or kiss those fingers.

We got here and all checked in. Judah slept through the first half of our wait in the CARES unit, and then woke up smiling, charming his nurse. I'm so thankful for the time we had with him awake. We took some video, some pictures; just enjoyed his smiles and sweet face to the fullest. A little after 6 he started getting hungry and fussy. I put him in the sling, and after several minutes he was sleeping again. I'm thankful for those last several minutes with him in the sling. Holding him close, kissing him, smelling him, whispering to him. Finally, they came to take him. Thank You, Jesus, for giving Judah that deep sleep. I put him on the bed asleep, covered him with a warm blanket, and kissed him one last time. Then they wheeled him away, still sleeping. Oblivion is a beautiful thing sometimes.

Now we wait to see that new beautiful face.....