"I'm here for CAED!"

I got a call this afternoon from our home infusion company (the one I love so much.......not!). There was a new voice on the other end of the line, and I was a little annoyed having to re answer ALL the same questions we've been dealing with since Dec. After I had been talking for awhile, the woman said, "Calm down dear....I'M here for Caed. Whatever he needs.....I will make sure he gets!" I was in complete shock. This surely wasn't the same company that had continuously caused my blood pressure to rise with every phone call. She went on to say how she "worked MUCH differently than.......(our previous pharmacist). She told me how her philosophy is "the patient's needs come 1st!" I responded with...."well, thank you!....YOU are truly an answer to our prayers." She laughed and said she had NEVER heard that one before!

So.....on Tues. they will be delivering everything Caed needs....and this time we won't have to pay a dime!

Thank you Lord AGAIN how You prove Yourself Faithful!!!!!!

Therefore I tell you do not worry about your life, what you will eat or drink (tube feeds included); or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your Heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life? (Matthew 6:25-27)

**just a little "poop update" : Caed only had 2 stools yesterday! That is a 1st!!!!!! The past month or so, his frequency has dropped to only 3-5/day. HE IS MAKING TREMENDOUS PROGRESS!!!!!! Can't wait to tell NE! (earlier this fall he was averaging 10-12) Now, we just need to pray his upcoming scope and sm. bowel series say the same thing.

2 for 2

....well, almost.

First off, the regular old Arm & Hammer seems to be just fine. We switched from the $180 bottle(s) of liquid to the 62 cents of powder. Caed hasn't skipped a beat. Yea!!!!

Then, I just got off the phone with our insurance company. They have been nothing but top-rate from the get go. The man I talked to was in shock at supposedly what our home infusion company has been telling us. He read me off our policy concerning enteral nutrition and said there is NO reason they should be denying us feeding bags. He told me where to go to on the website, and then stopped and said, "No, ma'am, can you just give me your company's number and I will personally speak to them about this matter?" wow! Talk about service!! Of course the person I usually have to deal with was out of the office, but he left a very detailed message on her machine. So, hopefully all will be worked out, but I'm not holding my breath. The lady with our home infusion co. generally puts up quite a fight.....unfortunately. But, I am encouraged none the less.

My next prayer is that when we go to NE in a few weeks, the drs. lower his time on the pump to only at night....then we won't have to worry about this whole "bag issue!" :)

Thank you again for your prayers concerning these matters.

God is GOOD!

All smiles

....this is the look I got when Caed and his Daddy walked into the house tonight after t-ball practice!!! Yea!!! We were worried because he has continued to talk negatively about playing. Just insisting that he "did not want to play this year." We have continued to encourage him and also kindly remind him daily of THE RULE where you "can't quit if you've already paid!" ha!! (that was actually mom and dad's rule) Anyway, we decided it would be better if just he and his Daddy went to practice tonight. Todd said he was a little whiny in the beginning, but stopped very quickly. The coaches were shocked (to say the least) to see him throw! He may be little, but he has always had quite an arm. ha! He and Todd are going to make a special trip soon to buy him some cleats and a new bat.

Thank you for continuing to pray about this issue. I know it may seem small, but for us.....this is such an important year. Thank you Lord for allowing him to have a good, fun practice!!!!!

Many of you have e-mailed me concerning his t-ball schedule. So, to make it easier I will simply post it (or at least the home games):

Mon. 4/6 (6:00pm) Old Celina Park 1
Sat. 4/11 (10:00am) Old Celina Park 2
Fri. 4/24 (6:00 pm) Old Celina Park 1
Mon. 4/27 (6:00pm) Old Celina Park 1
Tues. 5/5 (6:00pm) Old Celina Park 2

$179.40

...that's the difference in the cost of these two "medications" each month. And yet, they are basically the same thing. Sodium Bicarbonate. The one on the left is in liquid form, and I am guessing gentler on the gut. In some SBS patients however, the regular old stuff can cause excess gas and bloating. No one enjoys that, but I am going out on a limb here and thinking for those with digestive issues (ie....short gut), it would be worse. We have decided to give the powder a try! Again, this may seem like an odd prayer request, but this is where we find ourselves today.

We are also continuing to have a few problems with our home infusion company. I tried many months ago to find an alternative. Each and every phone call ended the same way....."Sorry, ma'am, we can't help you, but we know of a company that can..........." And of course they would suggest the very one we're trying to get away from!!!! We have had experience with this company in NE, and they were incredible!!! Top rate service! We developed a relationship with them, and grew to love our pharmacist. Our time in Lubbock also proved very positive with the home infusion co. there. Zero complaints. So far, here in Dallas, it's been more of "suck it up, and just go with it.....you don't have a choice." Although a few days ago, after talking to the Feeding Dept. with this company, I literally hung up in tears. (not a first with them) We are experiencing a new struggle in this whole ordeal. Things that were once "covered by insurance" are now no longer......according to this company. Things that my son has to have. (and I'm not talking about the latest video game) Something that is vital to his health and healing.

After a good cry, as HE always does, the Lord calmed me down and reminded me of a very familiar verse: And my God will meet all your needs according to His glorious riches in Christ Jesus. (Philippians 4:19)

These are a few of our needs. We all have them. All the time. There is always something that we are in need of. Sometimes it is tangible. Other times it is not. I know personally SO MANY of you and your current situations. Some are in need of financial stability..... healing from sicknesses that have plagued you or your loved ones for years.....clarity in decisions regarding the future and God's will for your life....forgiveness....a fresh start.....a baby of your own!

God sees all.
He loves deeply.
He provides perfectly.........................in HIS timing and through HIS ways.

Uneventful

That describes our day at the hospital. Praise God! After discussing Caed's history, lab work, and growth chart thoroughly, the endocrinologist honestly said she sees no need for anything at this point. One of the growth hormones in his body that came back "untraceable," was not a major concern to her. She said she looks at many other factors in conjunction with it, and those were in the normal range. He is also in the 20-25 percentile in both height and weight, which he has been most of his life. (I think it's just in the genes!) Caed had an x-ray of his hand (which he thought was "so weird!!").....and it came back showing his bones measured that of a 5 yr. old. yea!!! So, what was supposed to be a 3 hr. appt, was over in only 1. The dr. wants to see Caed back in 6 months to assess him again.

Thank you for your prayers! God is GOOD!!

**still no word yet on the CPK

Waiting....

......that's where we have found ourselves the past few days. Waiting for the drs. in Nebraska to discuss Caed's last blood draw. Our nurse coordinator said his CPK level was elevated. Not totally sure what that means, but she seemed a little perplexed and concerned. Todd and I are just trying to stay off WebMD.....(it can put things in your mind that shouldn't be there)....ha. So, we are waiting and praying that it is nothing.

Caed's first Endocrinologist appt. is tomorrow. It is supposed to be at least a 2-3 hr. visit at Children's Dallas. Not sure what all it will entail, but we are relieved to get this started. (growth hormone therapy) Although it has been interesting to see how BIG Caed is getting. He has gained almost 10 lbs. just this past year! (minus the TPN weight) We are seeing a "chunky" side of him that is so opposite what he has been like all his life. Not sure if it has to do with the amount of daily calories he's getting (18 hrs. of tube feeds (@ 120 ml) + everything he eats by mouth). I guess that will be a question we might get answered tomorrow.

Thank you again for all your continued prayers!!!!

The life I lead

Caed had his labs drawn last Wed. before we headed out of town. So far, we still have not heard anything. Some of these tests take several days, so hopefully we will hear something today or tomorrow.

As far as the leg pains.....I TRULY believe they are simply "growing pains." However, we are grateful to Nebraska for being pro-active in the matter. Because of Caed's condition, you just can't be too careful. Our next appt. is the week following Easter. He is scheduled for a scope (under complete anesthesia), a small bowel series (barium test), and also a bone scan. I hate that he has to continue going through all this, but tests are good. They show us what truly is going on "inside."

Although our family lives, eats, breathes Short Gut, there honestly are days I consciously don't "think" about any of it. I just administer the meds, hook and unhook, mix formula, write in Caed's poop journal.......but yet not really contemplate what I'm doing. Just becomes routine. I thank God for that! However, last night my parents and I began discussing again ALL of Caed's history, his present condition, and thoughts of the future. The last 24 hrs. have been as though I am living in it again. Several days ago, I came in contact with more "short gut" moms across the country. Hearing their story and then sharing ours......it's a mixture of great encouragement and incredible heaviness. I love talking to others. To compare. To receive more information. To be reminded again that we are not alone. The circle that Todd and I walk in.......can be a lonely one (as far as Caed's condition is concerned). Sometimes it can be hard when all others "see" is a normal, 5 yr. old boy running and playing. They assume all is back to normal. However, to talk with other moms and dads who deal daily with SBS, can be very reassuring. These people KNOW....they don't just sympathize.....they live it too! Some of our Short Gut friends are struggling GREATLY! They are fighting for their life as we speak. Some others are a step or two ahead of Caed. They provide a wonderful encouragement and "light at the end of an enormously long tunnel." Everyone is different, and yet all these precious kids share that one thing is common. Short gut.....and the difficulty of getting what little is left....to work! The one area that I have been a little discouraged by is the fact that ALL these other SBS kids began their struggle at birth. I have yet to meet or hear about another child that experienced a spontaneous malrotation like Caed. He seems to be in a field all his own. While there are numerous similarities, there is also a HUGE difference for me. I knew Caed for 4 1/2 years as a healthy, normal little boy. All of the other SBS kids I am in contact with (probably 20-25) all had their first surgery within hours of life. As difficult and unfair as it may seem, this is the only life they have ever known. Sometime I wonder which is worse, but am quickly reminded they BOTH have their down-falls. Every illness, despite the timing of the diagnosis is excruciating.

Just a few minutes ago, I got a call from our dear friends (the Free's). Kensley's central line has broke now a 3rd time. She is being wheeled down for surgery right now. Their plan is to take out her NG tube and replace it with a G-tube (while she's under anesthesia from the surgery). To hear J and Tana's voice......to hear a Mommy's heart being torn into again. Sometimes you just feel you can't "go on" when yet ANOTHER problem arises. I know from our experience with Caed, sometimes these "setbacks" are actually blessings in disguise. Please continue to pray for sweet Kensley. Her 1 yr. birthday is just around the corner. What an amazing, strong, little girl!

*We have also had a wonderful time seeing old, familiar faces this week being back in Lubbock. Yesterday at church, Caed and I got to visit with his former GI dr......Dr. Higgins.....and then we got to eat lunch with our sweet Nebraska family (Carol and Cordell). They were in Lubbock visiting their daughter and family. All of these people have become so dear to us. Each one had an instrumental part in helping us get through this past year. God is GOOD!!!!!!!