Friday, February 29, 2008
Day 47!
Gramma came and visited today. She played outside in the snow with Jonathan and Daddy. Joshua stayed inside with me and Mommy.... but not because of me.... instead, he's addicted to learning how to play chess. He spent most of his day on the computer learning to play chess.... and he's getting pretty good! But, as you can see from my pictures, he still found time to love on me!
I'll let you know what I think of this medicine and we'll see how long I have to stay on it... so far no major side effects.
Me an my brothers did some posing on the boppy this evening... I think Jonathan might want one of his own... he keeps laying in it when I'm not! He likes my toys too... he's always playing with my stuffed animals that make noise... he's a silly big brother!
Thursday, February 28, 2008
Day 46!
Any Given Day
Some have asked lately if things were looking up for us as they see pictures of Jacob apparently doing well on the blog. They assume that since he looks good and is gaining weight and has made it this far that perhaps there’s more hope than when we first began. The truth is… nothing has changed. Statistically and mathematically there is no hope. Jacob is a boy with Trisomy 18 which is a condition that usually takes their lives early. But the bottom line is that Jacob is a boy … a human boy… and eventually all our lives end. Nothing has changed. Statistically and mathematically there is no hope. Of course our faith in God has not changed either. So hope remains. Our hope is not only in a God who can do miracles and prolong Jacob’s life should He choose to do so, but also in a God who is merciful and loving enough to care for Jacob beyond this world when it comes time. That time still could come any day. It won’t necessarily be a steady digression… it could happen any night. Nothing has changed. We continue to live in the uncertainty which is Jacob. We’ve created a memory book of photos for Jacob and the front cover has his life verse printed on it… Psalm 27:14 “Wait on the LORD; Be of good courage, And He shall strengthen your heart; Wait, I say, on the LORD!”
We’ve had so many people contact us and let us know how Jacob’s story has impacted their lives and how his life has changed theirs. That’s truly encouraging and just one evidence of one of the little reasons that God brought him into this world. We’re kind of forced into living and appreciating one day at a time and I wonder how many of you reading have taken the time to consider doing the same. Every day. It’s a gift. Someone once told me that you should sit down and write your own obituary or what you want printed on your tombstone. What would you want people to say about you after you died? If you can write that down, then you have a mission statement for your life. Is what you’re doing right now contributing to or taking away from that statement? If you truly want people to say that you loved your family, then what are you doing today to love your family? Wouldn’t it be a shame if that was your goal but instead your tombstone read “Worked a lot,” “Loved Bowling” or “Unfaithful”? The truth is many people put off things that are important thinking that they will have time to fix it later in life. Most never do. Our life is a puff of smoke that appears for a moment and vanishes away. We never know when our last day will be.
We’ve tossed that idea around our house lately… If we could, would we want to know when Jacob’s last day was or not? Karen says that she could hardly stand the pressure of just knowing when his birthday was going to be! I guess the point is that if we’re living each day as we should, then it shouldn’t matter what day it happens.
Hebrews 9:27-28 “And as it is appointed for men to die once, but after this the judgment, so Christ was offered once to bear the sins of many. To those who eagerly wait for Him He will appear a second time, apart from sin, for salvation.”
Wednesday, February 27, 2008
Day 45!
So today I went and saw the doctor... now that he's back from his little escapade to Disney World... (without me!) And he weighed me buck naked and I'm...... 4 pounds 4 ounces! That means I've gained 7 ounces in the past two weeks! Much better than the loss of 2 ounces last time I was in there! Everybody was very happy! All the nurses came and goo goo'd over me...I wonder what they do when I'm not around? My poor brother Jonathan even tried to get pink eye just to get some attention but even then he only ended up with a sty in his eye!
We went and picked up Joshua at Gramma and Grampa's and had lunch with them. I slept through most of it... Joshua and Jonathan played Hide And Go Seek with Daddy... but I'm not very good at hiding... I'm always in the same spot.... and it's hard to seek when you're sleeping!
Mom went home and took a nap since she was up worrying about me last night again. So I took a nap on Daddy's chest out on the couch. My brothers took very good care of me and played quietly by themselves after their nap so that me and Daddy could get a little shut-eye.
I enjoyed listening to Mommy finish the Wizard of Oz book with my brothers before they went off to bed tonight. Me and Mommy are heading to the couch but she's been talking about putting me in a swing all day so we'll see how that goes if she remembers. Hope you had a as relaxing and hope filled day as I did!
Tuesday, February 26, 2008
Day 44
Day 43 - 6 Weeks Baby!
But Jonathan helped take care of me!
Sunday, February 24, 2008
Day 42!
Today was such an exhausting busy day that we almost went to bed without having taken any pictures of me! So here's a shot of me in my sleeper ... but don't get any ideas... I got my dukes up ready to fight!
So we got up and went to church this morning. In the middle of service me and the whole family went up on the stage for my baby dedication. It turned into a family dedication since Mommy and Daddy never did it for Joshua or Jonathan. My brothers really enjoyed it since we all got little Bibles as gifts from Pastor Joe. Check out the video of the ceremony on the sidebar! Gramma and Grampa came and watched and we went out to lunch afterwards.
Did you know that there are people all over the world reading my blog?!?? Isn't that crazy? We get messages from Texas, California, British Columbia, South Africa, the United Kingdom and the Netherlands just to name a few! I'm a global celebrity! Well, at least that's how I was treated this evening when I went to the spaghetti dinner in my honor. I got to meet all kinds of nice people who were thrilled to meet me and my Mommy. Unfortunately we had to leave early because Mommy dropped my dinner on the floor and didn't have a backup... and BOY WAS I MAD! Gramma and Grampa took us home so we could get some more milk for my belly!
Thanks for your prayers for my Daddy... he's still feeling a little weird and trying to avoid breathing on me in case he still has something... but after sleeping and going without food for 30 some hours (and if you know my Daddy... he usually has trouble going without food for 30 some minutes) ... this morning he was able to eat a bowl of cereal and at lunch he ate half his meal (which again... if you know my Daddy...) by dinner he was eating Pancakes with Joshua and Jonathan... I know! Pancakes for dinner!??!? That's what you get when you let Joshua pick out what's for dinner! So I think he is on the road to recovery. Please remember Mommy in your prayers too as she has had the sole responsibility of taking care of me while Daddy wasn't feeling well. Hopefully I'll let her get some sleep tonight....
Saturday, February 23, 2008
Just A Reminder For Tomorrow
Date: Sunday February 24, 2008
Time: 4 PM
Location: Faith Lutheran Church
2730 Transit Road Newfane, NY
Steve Sprout, a missionary from FamilyLife will be speaking.
There is no cost for the dinner, but a free-will offering will be taken.
If at all possible, please consider joining us this weekend and feel free to pass this information along!
Day 41
Friday, February 22, 2008
DAY 40!
So Mommy and Gramma took Joshua and Jonathan to the aquarium today. Here's some shots of the fun that they had outside. So this left me all alone with Daddy. Since we had such an exhausting night... I decided to sleep through most of the day. We listened to the radio and Daddy kept trying to take a nap with me but people kept waking him up. Poor Daddy... maybe I'll sleep better for him tonight... probably not!
When the boys came home and told us about all the fun that they had this is how I felt:
It's okay though... Mommy was home to snuggle and take care of me so I got over it quick. I missed her. She spent a lot of time with me strapped to her belly tonight as she worked on a photobook. Joshua read us all bed time stories... he sure reads well for a 5 year old! Then Daddy read us Bible and prayed and put my brothers to bed. Now that everybody else is ready for bed it's about time for me to wake up and cause trouble! Tell you more about how that goes tomorrow!
Jesus and Children
I know that “Jesus loves the little children” and He used them as an example of the trusting faith that we must have in Him in order to enter the kingdom of God…. and I think about Jacob and his situation. He HAS to have faith in us. He HAS to trust us. His very survival relies upon it. He HAS to trust that we’re going to feed him, and change him, and bathe him and clothe him and keep him warm, and the list goes on…his faith and trust in his parents is what keeps him alive at this point. Is our faith that vital in our own lives? Do we daily depend on God for our every need, or do we try and take care of everything ourselves and fit God in when we can? That wouldn’t work for Jacob… if we just fit him in where we could he would not survive.
Matthew 18:1-6 “At that time the disciples came to Jesus and asked, ‘Who is the greatest in the kingdom of heaven?’ He called a little child and had him stand among them. And he said: ‘I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven. Therefore, whoever humbles himself like this child is the greatest in the kingdom of heaven. And whoever welcomes a little child like this in my name welcomes me. But if anyone causes one of these little ones who believe in me to sin, it would be better for him to have a large millstone hung around his neck and to be drowned in the depths of the sea.’”
Jacob is a great example of humility. He can’t boast of anything. Anything and everything that he is, has done, or will ever do is by the sheer grace of God. That’s obvious to us. He can’t even feed himself… he needs his parents to push food down a tube into his stomach for him! But what may not be as obvious to some of us is that the same is true for me, you, the homeless man down the street, Bill Gates, the president of the United States and every one in between. We must humble ourselves and acknowledge that God is sovereign in our lives and He has given and He takes away and regardless of our individual situation He is to be praised for what He has done! Jesus then equates Himself to how we treat children. He does so also in the following passage:
Matthew 25:34-43 "Then the King will say to those on his right, 'Come, you who are blessed by my Father; take your inheritance, the kingdom prepared for you since the creation of the world. For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.' Then the righteous will answer him, 'Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? When did we see you a stranger and invite you in, or needing clothes and clothe you? When did we see you sick or in prison and go to visit you?' The King will reply, 'I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.' Then he will say to those on his left, 'Depart from me, you who are cursed, into the eternal fire prepared for the devil and his angels. For I was hungry and you gave me nothing to eat, I was thirsty and you gave me nothing to drink, I was a stranger and you did not invite me in, I needed clothes and you did not clothe me, I was sick and in prison and you did not look after me.' They also will answer, 'Lord, when did we see you hungry or thirsty or a stranger or needing clothes or sick or in prison, and did not help you?' He will reply, 'I tell you the truth, whatever you did not do for one of the least of these, you did not do for me.' Then they will go away to eternal punishment, but the righteous to eternal life."
Jesus reminds us that whatever we do for the “least of these” we did for Him. I have to admit that at 4:30 AM when I want to sleep and Jacob wants to be wide awake it’s hard for me to remember that this is my meeting with Jesus. It’s hard for me to remember and enjoy my meeting with Jesus sometimes when Jacob has peed, pooped, and puked all over himself, his clothes, his blankets and the couch! But did He not say, “I was sick and you looked after me?” Whatever you did for the least of these… you did for Me. What an honor it really is to hold this precious image of God in my arms and to love him, knowing all the while, that my love towards him is being accounted to Jesus on my behalf as well. What we do here on this earth to the “least of these” will have eternal consequences. What have you done today for the “least of these?”
Thursday, February 21, 2008
Day 39!
Wednesday, February 20, 2008
Day 38!
I did a lot of hanging out with my family today! Here's a neat shot of me that Mommy took while I was in Daddy's arms. And here's another one of my and my brothers! Aren't we adorable?
Spaghetti Dinner For Jacob
Date: Sunday February 24, 2008
Time: 4 PM
Location: Faith Lutheran Church
2730 Transit Road
Newfane, NY
Steve Sprout, a missionary from FamilyLife will be speaking. There is no cost for the dinner, but a free-will offering will be taken. If at all possible, please consider joining us this weekend and feel free to pass this information along!
Tuesday, February 19, 2008
Day 37
Aunt Nancy came over to visit today and somehow while she was holding me I managed to pee on her and the couch! They thought they had me covered up during my diaper change but I showed them who is boss!
Gramma and Grampa brought Jonathan home and brought us dinner. I slept through most of it. I did a lot of sleeping today... Mommy's not going to like that tonight!
Eating is going well for me. Mommy and Daddy just keep pumping me full of food and I'm loving every minute of it. No doctors appointment tomorrow so we'll have to get the nurse to weigh me later this week so I can give all you "weight watchers" an update!
Don't you love my cute little outfit!
Monday, February 18, 2008
Day 36 - My 5 Week Birthday!
Mommy and Daddy decided to spread me out with all of the cards and letters that we had received... check out this picture...see if you can find the one that you sent me....
Sunday, February 17, 2008
Day 35!
Saturday, February 16, 2008
Day 34!
Friday, February 15, 2008
Just A Reminder..If You Can Make It ...Great!
This Saturday February 16, 2008 6:30 - 9 pm
Grace Baptist Church 2525 Eggert RoadTonawanda, NY 14150
A portion of the proceeds will benefit Children's Hospital Neonatal Intensive Care Unit
Hosted by friends of the Fahmer family
Anyone and everyone is welcome to attend, but if you know ahead of time that you and your family or friends are coming, please let us know. The contact information is below. We will be serving chocolate as well as many other kinds of desserts, coffee, teas, etc...If you would like to help in any way please contact Del and Chrissy Reid @ reid.chrissy@gmail.com
Day 33!
Thursday, February 14, 2008
Day 32 - My One Month Birthday!
There's also some new videos for you to check out along the sidebar! Enjoy!
Wednesday, February 13, 2008
Day 31!
Tuesday, February 12, 2008
Day 30!
((My brother Joshua took this picture of me... not bad for a 5 year old, huh?)) What a night! I'm spoiled... I decided that I didn't want to sleep alone in my bed so I fussed until Daddy gave in and took me to the couch with him (which only took about 2 seconds)! We slept on the couch until early morning but then we had to get all packed up in that nasty car seat (have I mentioned that I hate the car seat?) and head off to the cardiologist office again. This time not only did I see the cardiologist, but my pediatrician, my home nurse and the lady from CompassionNet were there! They all just wanted to get together and sit around a big table and talk about me. Can you blame them? I am the hottest blog writer on the internet after all.
I continue to freak people out. This time it was my oldest brother. Mommy and Daddy left me alone with Joshua for a few minutes while they got ready to leave and somehow we managed to get my feeding tube out and spew my stomach contents "all over the couch," (according to Joshua). Joshua was pretty upset because he thought he did it, but honestly, I think I hooked it with my finger and jogged it out myself. I hate that thing.
The best part of that whole experience was that Mommy decided to leave me wireless for a better portion of the morning. No pulse/ox connection and no feeding tube! I could go out into the world like everyother 4 pound baby... or maybe not....anyways... once we came home mommy let me suck on a bottle nipple that actually had something in it ... it wasn't that dumb pacifier... I finally found the GOODNESS! I drank about 17 cc's without throwing up!
Gramma watched Joshua and Jonathan while we were gone and hung around until Buscia and Tom came to visit. They braved the nasty weather to come see me and brought Costanzo rolls for lunch! MMMmmmm!
Ms. Erin came and dropped off dinner for the family. They all really enjoyed it. Joshua especially enjoyed the yummy cupcakes.
My cardiologist is not a fan of my pulse/ox machine and he told Mommy and Daddy to "screw the pulse/ox monitor" ...whatever that means. So whatever it means, Mommy has left me unplugged all day! No more annoying beeping everytime I stop to pass gas! However, I will miss watching Daddy trip over it everytime he tries to move me around the house. Mommy says I'll still have to be on it throughout the night and from time to time to check on my progress but this way people can look at me instead of some silly machine.