Thursday, February 26, 2009

There is a time for everything......

......and a season for every activity under heaven:


a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend,

a time to be silent and a time to speak,
a time to love and a time to hate,
a time for war and a time for peace.

(Ecclesiastes 3:1-8)

Today went NOTHING like I had planned. And for the "planner" in me....well, let's just say it was hard to accept. However, even when things began falling apart and my heart torn into (again), God quickly allowed me to see why these "unplanned days" are sometimes just what we need. I have been struggling with a particular situation for quite some time, and finally today..... He opened my eyes and showed me a tiny glimpse of the "why." There is a time for everything! Even in our Christian walk. I am currently going through a season that I have never been before. Unfamiliar territory. I have been fighting it and my pride telling me 'I am wrong....I am weak'. God showed me today.................

I am RIGHT WHERE HE WANTS ME!!!

I may not understand. I may still fall and let the world's voice consume me.....and let me know what I should or should not be doing. But, the Lord graciously showed me HIS WILL at this particular time in my life. For the first time in a very long time.....I truly have confidence. Not in myself, but in His plan. His purpose. And that's what it is: There is a real purpose for where HE has me. I have not been forgotten, or considered unimportant or useless in His Kingdom. He is teaching me to be still......to listen....and to do the job He has set before me with my whole heart!!!! (even if my job seems unimportant to the world)

Thank you Lord for knowing how much I needed this day! Help me to live strong....unwaivering....and have boldness and confidence in YOU!

Tuesday, February 24, 2009

Make-a-Wish

Tonight the Make-a-Wish Foundation came to our home to talk with Caed. He drew several pictures of different "wishes" he had, and did a great job answering their questions. We are very grateful for this opportunity and know it will surely brighten his world. Although outwardly Caed appears "normal"......we have to remember he still struggles with a life-threatening illness. When we reflect back on this little boy's past year, we are amazed at all he went through and how tough and brave he continues to be. He is our hero..............................



**his wish was Disney World!!!!!

Monday, February 23, 2009

Caed's newest accomplishment



Caed learned to ride a bike a few weeks before his illness, but after a couple of hard falls, he was done! He begged his daddy to put the training wheels back on. Now.....a year later, he decided to try again. I think he's finally got it down, don't you? ha!

Sunday, February 22, 2009

HE always knows best

Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light. (Matthew 11:28-30)




One of my dear best friends, Marilyn....asked me several weeks ago if I would be interested in going to a women's conference with her church from Lubbock. It was in the DFW area, so I jumped on it. It was the Wholehearted Mother Conference (with speaker Sally Clarkson). It was of course wonderful. I always love going to things like this, and feel refreshed and encouraged when I leave.

However....the Lord had different plans for me this weekend.

Saturday morning I woke up with horrible sinus and allergies. I desperately tried to make it through the day, but soon discovered I just couldn't. With the conference going full speed ahead, I disappointedly made my way back to the elevator and to our room. I just couldn't believe I was having to miss it. "The Lord knew HOW MUCH I needed this weekend!!!! Why did He allow my body to get sick now????"

I soon discovered how much He indeed DID KNOW! He knew I needed something different. Sure the speaker(s) were terrific. The other women in our group were seasoned, mature women of God and such great encouragement for me. I needed a powerful message. Corporate worship. Time with one of my best friends. And, yet.....as I walked into that empty room....I felt HIM!!!! I knew what I needed was simple REST! Time alone.....the first in almost a year. Time to pray. Time to cry. Time to listen. Time to be still.

I thank God for loving me and knowing me like He does. He knew exactly what I needed, and knew the time was now. As incredible as the conference was to the 600 other women in attendance, I thank Him for using it to bring me to that place of solitude. For allowing my body to receive that much needed rest. And for later allowing the special time with my friend to share, cry, and pray. Oh....how we both needed it!

I also thank my husband for taking time out of his busy schedule to be home and watch the kids. Having all 3 alone is no simple task. With a baby and one with medical needs.....it can get overwhelming very quickly. He did wonderful. When I walked in late last night, everyone was in bed, and the house was spotless!!!!! Another task not so easy. I love and appreciate so much his willingness to allow me to be away 2 days.

Just another reminder this weekend of how "God ALWAYS knows best!!"

Tuesday, February 17, 2009

The "petting zoo"

The kids had a wonderful day out with another home schooled family. Thank you Giblins for inviting us to your home. Reagan and Caed had so much fun....and talked about it the rest of the day. I lost count at the number of animals we saw.....you name it, they had it. Caed informed me when we got back that we needed to get a horse for our backyard too!! (we live in town, by the way!) He wasn't joking........ I guess he'll need to talk to his Daddy about that one. :)

As Caed was bouncing up and down from Pepper's trot, I honestly got a little teary eyed. Such a simple experience, and yet it brought great emotion. Will it always be this way for me? Will the "little things" always take my breath away with Caed? I hope so. Because it's in those times that I am reminded what a wonderful miracle he is!!!!

Thank you God....................














**always grab your camera 1st....................then the mop!!!!

Monday, February 16, 2009

He's a pro now!

All fun and games.....






...until someone busts their lip!



This was Caleb's first outing to the Old Celina Park. The kids were so excited to show him the fun that awaited. He did, actually, have fun that is. Until....one small unsettled step caused a face plant with the concrete. He cried. Blood stained my newly washed white jacket. But, we all survived and life is good.

Wednesday, February 11, 2009

More weight....more meds

If the scale is accurate, it is showing that Caed has finally gained another pound! (after 6 wks) Todd came home tonight and immediately commented how Caed looked "bigger." He has always been able to tell whether Caed has gained or lost without seeing the scale. Must be a hidden talent of his. I'm just glad he doesn't come home and comment on my weight!!!! Anyway....we were very happy to see this increase.

Caed's daily med list has doubled. Along with 2100 ml. of Neocate formula and 300 ml. of 1/2% Sodium Chloride each day, he also is on Sodium Bicarbonate (3x/day), Culturelle (2x), Imodium (3-4x), Vitamin D3 (2x), Zinc Sulfate (2x), and the antibiotic Omnicef. AND....they want him drinking 1500 ml. of his ORS drink everyday. Soon, he will also have to start taking a copper supplement. Some of his vitamin/mineral levels are getting pretty low. Our dr. in NE said this was very common among short gut patients, and hopefully as he gets older his bowel will adapt better and absorb more. (and less need for supplements) His NE GI dr. said the "rash" he had last week also could be from his low copper level. ??? Who knows? The spots are almost completely gone now. Praise the Lord for that!

Look Nana and Grandaddy at my new birthday present!! Does it look familiar?



Our little AWANA kitty and "ferocious" puppy

Sunday, February 8, 2009

Birthday Blessings

What a year Caleb has had! I know he will have no memory of it (which is more than the rest of us can say), but I just can't believe what all he has been through just in the 1st year of his life. Yes, he was healthy. Yes, he was cared for. Yes, he was surrounded by so many who loved him. I am enormously grateful for those things. I do not take any of them for granted. And yet, there is a corner in my heart that is empty. Empty from lost memories of his 1st year of life. Empty knowing the bond between us was broken 2 weeks into his fragile life.

And yet I praise God! We have only been "home, together, as a family of 5" for 2 weeks, and it already feels like a lifetime. The bonds have been retied, and I know it is nothing short than the grace of God. He is Faithful to "give back what the locusts have eaten."

One year ago, today. So many memories: Heading to the hospital at 5 am for a scheduled c-section, seeing him for the first time, and watching the pride and joy that his 2 older siblings wore each time they came to visit. I TRULY cannot believe it's been a whole year! I know probably every mother in the world says that on their baby's 1st birthday, and yet I honestly don't know where it went. It came.....and was gone before I could catch my breath.

Oh, how I love my little "surprise" gift from God. Todd and I were not planning on #3. But, God knew. He knew what was in store for us in 2008. He knew we needed a little curly headed, big blue eyed, toothless grinnin' "distraction" this year. And he was. Sometimes just being with Caleb, just holding him, rocking him, playing with him.....even if for just a few minutes....somehow made me forget. Just for a moment. Forget the insurmountable pain that flooded my heart. He was God's gift to us. All children are! But, Caleb, he's different. God sent him for a specific purpose at a very specific time in our lives. I know it's not over. There are many more purposes to his life that I can't wait to see fulfilled. Only God knows. And I trust Him. He knows what we need, when we need it. Although the timing of Caleb's birth and Caed's illness were "too close for comfort" and caused me on numerous occasions to ask "why God?"............I know looking back in hindsight now there was a reason. Thank you God for loving us the way You do. (even when it doesn't make sense to us) It is truly in those times, we see YOU! Your always present hand in our lives.......

.......working all things for good......................(Romans 8:28)


















Happy 1st Birthday Caleb!






He likes chocolate!





Saturday, February 7, 2009

A real team






For those of you who have followed the blog from the beginning, you will probably appreciate this more. Last year at this time Caed was finally old enough to sign up for t-ball. He was SO excited and would talk daily about his "uniform, cleats, glove, etc..." I will never forget the day (3/10) I was standing by Caed's hospital bed when my cell phone rang. We had just finished getting him up out of bed and walking several feet out to the hall. It was excruciating for him. He cried and cried in pain. Simply walking 10-15 feet was an enormous task, and it was emotionally as equal for those of us helping and watching. It broke my heart to see him suffer so. And also put in great perspective that my "little rambunctious 4 yr. old" couldn't walk on his own. We had just got him back in his bed, and I stepped out in the hallway to take my call. I didn't recognize the number, so I wanted to get away so I could hear. It was Caed's t-ball coach in Celina informing me of his first practice. I tried to hold my composure and briefly explained our situation. As I hung up, I fell to my knees with my head up against the wall. My little boy's dream of being on a "real team" wasn't going to happen.........

.....at least not then.

Today I just got through sending Caed's t-ball application in. When I told him, his eyes lit up, and he said, "on a REAL team??" I said YES! I told him he would have a real uniform, a real glove, go to real practices, and REAL games! His smile said it all.......

I promised myself last year after answering that phone call that I would not take simple things like t-ball for granted. Before all this happened, I probably had the idea that things like this were just a "rite of passage.....a given" for little boys. I now know that are not! We are not guaranteed tomorrow. Make the most of the day you have been given. It IS a gift!!!

Do not boast about tomorrow, for you do not know what a day may bring forth. (Proverbs 27:1)

Just random pics

The puppy has had enough!


You just never know what Caed will come up with next


Helping big sister with her schoolwork


Don't let those little legs fool you......they can move!!!!!!


Caleb's 2nd Mommy.....changing his diaper and putting on his clothes

Thursday, February 5, 2009

Spot update from our little leopard

So far all his lab work looks fine. They are still waiting on a few levels to come back, but nothing that would have caused the spots. Both pediatrician and NE are in agreement that it was probably just caused from the viral infection. (which he continues to show NO signs of having) Don't get me wrong, I absolutely believe that she saw a "bad sinus infection, " but it's just odd when the child hasn't complained once and we haven't see any signs of sickness. Anyway, that doesn't matter. The plan is to get him started on an antibiotic. Because he is short gut, he won't absorb the full dose, so he may need an additional shot to kill whatever is in there. Another down side is that this antibiotic can cause diarrhea. So, if his stool output greatly increases, we might have to give him some additional fluids through his g-tube. It can also cause the stool to a have a red color. Lovely. Just the perfect little side effects for "gut boy." Remember he has a "poop journal" that we record every stool, the time, and consistency. (more than you wanted to know, huh?) So, taking a med that has stool side effects is not something we necessarily look forward to. Hopefully, all will go well, and we can get rid of this infection. The spots are already diminishing. They said because they are little blood spots, it might take several days to completely disappear. So, I guess we concluded that the pressure buildup from the infection caused the capillaries to thin....and eventually burst. We are SO thankful it was as simple as this.

Forgot to give you his weight this week: he is still sitting at 41 lbs. Been here for the past 5 weeks. It's probably fine. Just hard when you are so used to praying for a weight gain each time he steps on the scale. However, the part that eases my mind a bit, is when I see the jeans I bought him in Nebraska getting too short and rather snug in the waist. This is a major rarity for this little guy. He has always been able to wear the same clothes at least 2 years!! The fact that he only lasted 5 months this time.....yea!......he IS growing!!!

(his endo. appointment his scheduled the end of March in which he will get started on growth hormones. Can you even picture it???? ha!)

Tuesday, February 3, 2009

Unplanned visit to the dr.


I'm a little hesitant to even post this picture because it truly doesn't do justice to reality.

However......we have had an interesting day. Caed woke up this morning with "the spots" again. We have seen them before, but never to this extent. The 1st time they surfaced was Mar. 1, 2008. Caed was lying in the ER and as each dr. made their way in to assess him, we noticed a few spots around his eyes and mouth. They looked like freckles, but as a parent you KNOW each and every speck on your child. Those that night were new. The drs. asked us about them, and we shared that they were not normal. Several times while Caed was in the hospital, we would all of a sudden notice "the spots" emerging again. Only staying a few days and then gone again, until next time when they would pop up somewhere new.

So, today when we saw his face, we weren't overly alarmed, but as we inspected further, we noticed instead of about 5-6 spots, there were hundreds! All along the sides of his face (around the eyes), covering his neck, and onto his upper chest. We just kept a close watch, but both Todd and I felt uneasy. Call it a parent's intuition, or simply.....Caed's track record. The strange part was that he was acting completely normal. (a good thing....but just puzzling) I called Nebraska and we talked about several possibilities, but nothing was ever confirmed. They wanted us to go see our pediatrician. Caed already had his bi-monthly blood draw scheduled for tomorrow, so we decided to change it to today.

His dr. was a little uneasy when she saw him.....didn't immediately chalk it up to "eczema" or something I knew it wasn't. She did find that Caed had a bad sinus infection. Another big shock. Caed has been acting completely fine....no coughing, runny nose, etc.... Anyway, he will start an antibiotic for that. She believes the spots are broken capillaries. I agree, but exactly how?.....just not certain.

I will be in contact with Nebraska in the morning, so we should be able to hash out the details in the days ahead. He also had a very extensive blood draw this afternoon (in which he did the BEST he has ever done!!!!), so we should get some answers if anything is wrong. I feel much better now, even though all the questions haven't been answered in my head. In time........

Monday, February 2, 2009

No messin' around


We just found out Caed had a loose "toof" this morning....and now 12 hrs. later, we're putting it under his pillow. Way to get it done, Caed!