Monday, March 31, 2008

Day 78! 11 WEEKS!

So you all want to know how my doctors appointment went right? More importantly, I spent the morning with Mommy and Joshua playing card games and chess (while Daddy and Jonathan were at the laundrymat... hopefully our replacement washer will be delivered sometime next week... but we're not holding our breath!) So the good news from my doctors appointment is that I gained 2 ounces - officially 5 pounds 4 ounces! The bad news is that I gained a lot of bilirubin as well. Apparently there's two different kinds - there's the indirect which can be treated with the pretty lights or a biliblanket. My indirect level is just above 10% and that's not considered a high number. I was really looking forward to glowing in the dark but that's not going to happen unfortunately. Then there's the direct - which I guess is caused by something not functioning correctly in my body. Mine is around 7.9% which is really high. This probably means that there's something going on in my liver. Could be something as simple as a blockage of sludge which would be treatable with antiobiotics. Could be that somethings gotten stuck in there - or it could be that my liver has a genetically small opening which isn't allowing it to drain properly. Unfortunately the only way to fix those problems would be through surgery - and no one wants to put me through surgery with the way my heart is right now. That's pretty crumby news to find out on your birthday! So I have an ultrasound scheduled for Wednesday afternoon to see if they can find out what's going on in my belly. Please pray that it's something simple that can be fixed with medicine!
Mommy's also been concered about my bottom. Lately it's been real sensitive and red and so the doctor asked what we've been using and the recommended a new product. We'll talk more about that later!
After my doctors appointment me and Mommy and Daddy went to Fuddruckers for lunch. Daddy says that I am a miracle worker because I got Mommy to finally take him to one of his favorite restaurants from when he was a kid. Daddy was kind of disappointed that they no longer have the big dead cows hanging in the window, but Mommy was glad about that, and thoroughly enjoyed her lunch and our little date together. We stopped at Toys R Us to look for some birthday presents for Jonathan and then headed back to Gramma and Grampa's to get the boys.
When we got there they had just finished watching E.T. for like the millionth time and we decided to hang out at Gramma and Grampa's for my 11 week birthday party. Grampa bought me a Carvel ice cream cake and Mommy even dipped my binky in it a little bit so I could get a taste of frosting! Mmmm! Gramma called her friend Mrs. Hooper who came flying over so she could see me. She sat and rocked and loved on me for a while. It was nice. After our ice cream cake dinner we played some games and then headed home.
After we went home and got my brothers to bed Daddy went to the store to get that product that my doctor recommended I use on my bottom. The doctor had said that it would be found in the aisle with the hand lotions and such so Daddy looked there and in the baby aisles - to no avail. The doctor had written down the name of it, "Bag Balm." So Daddy asked the lady in the lotion aisle if she had ever heard of it. She said, "Oh yeah, it's over in the pet section. Near where all the dog shampoo is." "The pet section?" Daddy asked. "Ok." So, sure enough, over in the dog shampoo aisle right below the flea and tick protector was a little green box labelled Bag Balm. Daddy noticed that it said that it had Lanolin in it so he grabbed it and brought it home for me. I was kind of interested in this little green box so I started reading, "Since 1899 Bag Balm has been the farmer's friend helping keep dairy cows from becoming chapped from the harsh Vermont environment." First off... the last name's Fahmer, not farmer. Second of all.... we don't live in Vermont! And third, and most importantly, I'M NOT A DAIRY COW! What's up Doc? So I kept reading, "For chapped conditions and superficial abrasions. This protective ointment helps to keep superficial tissue moist and soft." Ok, I'm down with that. I want my butt to be soft... and it's usually moist anyways with all the peeing I've been doing. I can live with that I guess. "For use on cows, thoroughly wash treated teats and udder with separate towels before each milking. To avoid contamination after each milking, bathe the udder with plenty of hot water, strip milk out and dry skin." Alright, what's going on?!??! Am I seeing a pediatrician or a veterinarian?!!??! You better hope this stuff works on my hiney or we're going to have to talk, pal!





DO I LOOK LIKE I HAVE TEATS OR UDDERS?!?!


Sunday, March 30, 2008

Day 77!

Here's a sweet shot of my brother Jonathan, just because he's cute! Daddy didn't think I was so cute at 5 AM this morning I bet! Mommy called it quits and went and got Daddy because I was acting up. So we hung out on the couch for a while until Joshua woke up. My breathing (or lack thereof) even got Daddy concerned this morning. He kept talking to me, and touching me and stuff but I was breathing.... just real shallow. I guess that's easy to confuse with not breathing when you have the habit of stopping for a while.
So we got up and went to church this morning... of course we were late. We sat in the back and I had a lot to say. The people around me like to listen to me instead of pastor. So Mommy took me out of service and went and fed me elsewhere. After service people came over and said that they were sad to see me leaving because they like the little noises I make. See Daddy, they like my noises... then again... it wasn't 5 AM then! Sorry Daddy.
Then we went to Gramma and Grampa's for lunch. As usual, I slept through most of it in my car seat. But then Gramma took us on a walk to look for "signs of spring." (Which are hard to find in Western New York this year!) Joshua and Jonathan had a great time finding "melting snow" and "moss" and "green grass" and "red flowers" and writing them all down on a list as they walked around the block. I just enjoyed rolling in my stroller. Don't worry ... I was covered with all kinds of blankets! You wouldn't have even been able to see me!
When we went home the boys played outside in the cold and took a walk around the block while me and mommy hung out. She was nice enough to take my tube out for a couple of hours. But I didn't do so hot with my bottle so I had to get a new one later on. I like to suck on it.... just still having trouble with that swallowing thing.
Then Daddy's friend Megan from high school came over with her 6 month old babies. A boy named Finn and a girl named Ella - they're twins! Poor kids. I didn't have a whole lot of room in mommy's belly when I was in there by myself! I can't imagine what it would have been like with a girl in there hogging all the space! Ella was actually the same weight when she was born as I am now - 5 lbs 2 oz! Can you believe that? And take a look at these pictures - she's pretty big now! Speaking of which - tomorrow's the big official weigh in day at the doctors office... so be on the edge of your seat! Pray for increase - no going backwards! Also pray that they get everything sorted out with my bilirubens and stuff. Mommy took a picture of my poopies today to show Dr. Nancy what color it's turned into - be thankful that Daddy is the one that knows how to put pictures on my blog because he refused to let me put it up even though Mommy probably would have. It almost made Daddy barf each time he's seen it!
Here's a great shot of me and the babies - check out Ella grabbing Joshua's head! :) They like to pull hair - glad I don't have much!

Saturday, March 29, 2008

Day 76

I decided to practice for the swimming pool last night... Mommy didn't like it, but I've watched my brothers hold their breath in their swim classes so I don't know why she gets so upset when I try it at home. I don't know where these spells of not breathing are coming from - I was doing so good at not having them for some time now. My nurse didn't especially appreciate it yesterday either when she was trying to count my breaths and I wasn't taking any! So it messes up my sleeping and scares Mommy out of her sleep every once and a while... life goes on (after I start breathing again!) Speaking of my nurse, she came back out this morning to prick me in my foot! OUCH! That's the first prick since the hospital - I almost forgot how much that stings! Don't worry... I took it like a champ... hardly made a wimper! She's getting a blood sample to send to the lab to check my bilirubin levels. Mom's kinda concerned since my poopies have changed from yellow to a creamy color. We've been told that that could mean that my liver isn't doing what it's supposed to. We hope to find out more on Monday when we get our test results back and see my doctor. Hopefully this week they can turn me into a glowworm with a bili-blanket. Don't worry... you'll see the pics I'm sure! In the mean time, here's my first band-aid since being home from the hospital! Let's all give it up for Dad for 10 weeks of not breaking me! Yep, that's Spiderman... I know you're jealous... my big brothers must really love me to share their band-aids with me! I took a nice long nap in my own bed today. That's right... not on the floor, or my boppy - not on the couch or in Mom and Dad's bed, but in my own real crib in my own nursery! I haven't spent much time in there but Mom's trying hard to get me to sleep on my own. Thanks to CompassionNet for getting us a video monitor so that Mom can watch me anywhere in the house while I sleep in my crib. She doesn't know it but I like to make faces at her when she's not watching! And I'm not the only one... my brothers are constantly sticking their faces in my camera and running back and forth between my room and the video monitor and laughing at each other. Sometimes Jonathan talks to the TV screen... he doesn't get that I can't hear or see him because he can hear and see me just fine. It's really cute!
Grampa's cousins Geri and Larry came to visit me today all the way from Tennessee. They were in town for some party but made a point to make sure to visit me. I'm sure I was the highlight of their trip! Can you imagine being this close to a superstar like me and not coming to visit? They are very sweet people but like to argue over who gets to hold me! :)
After dinner tonight we had family movie night and we watched Searching For Bobby Fischer because Joshua has really been getting into chess. I know Joshua loved the movie but since I don't know how to play chess ... (maybe some day Joshua can teach me) ...I decided to do what I'm good at instead... I'm like a grand master of sleeping, you know?! And when I'm laying on Mommy... I'm probably the World Champion Sleeper! So after the movie Mommy tried to keep me up until at least midnight so that I'll sleep better during the night. One of the ways that she attempted that is by letting me lick her finger after she had just eaten a piece of chocolate. MMMMMMMMmmmm! I know some of you had been telling Mommy to let me have some chocolate so I have one thing to say to you... THANK YOU! It was really yummy. Almost as good as my gas medicine!

Friday, March 28, 2008

Day 75

Well I had Mom up quite a bit last night....I just fussed here and there....BUT she keeps messing with my feeding schedule so I am all messed up now.....the nerve....she wants more sleep so I have to starve?!?!? I think not. You see, she is trying to up my feeds so that I go longer....and sometimes I do ok and then other times I don't tolerate it well.....so she is going back to the 3 hour schedule with the exception of her midnight-3am feeding......she will feed me at midnight and then see how long I go but then resume the 3 hour schedule after that. So she was tired and woke Dad up early to be with me until my brothers woke up. We watched some more Star Wars and Transformer movies.
Then we had a load of visitors from Essential Care, my nursing company). Miss Ann Marie the nurse came over and checked me out....I am quite yellow so we are in the process of getting me treated.....that means I have to get poked! They are going to get me a "bili-blanket" to help get my bilirubin count down.....I've managed to get the jaundice under control a few times but this time it is taking a little bit longer.....so we'll see what the levels are and take it from there. Miss Beth came too to play with my brothers and talk to them about heaven and had them draw some pictures about heaven. She also read them a few books to get them thinking a bit. Miss Ann Marie, the social worker, came too to check in on us and see how we all have adjusted and make sure everything is going well.
Then Gramma stopped in to help Mom out while Dad went to work. Gramma watched all 3 of us boys by herself for the first time.....Mommy was more nervous than she was! She just ran to get some milk and go to the bank....she was only gone for 40 minutes but couldn't wait to get back home. She just loves me so much she doesn't like to be away....who can blame her. Grampa came over to join in and help out.
Miss Jen (the photographer who took those amazing pictures of me and my family) and her son Sam came over to bring us dinner. Not only can she take pictures but she can cook a mean lasagna! Sam helped out too and boy did my family enjoy it!
Now, my brothers are fast asleep (Grampa too!), Gramma is rubbing my legs (I LOVE it when people do that) and so I think I may get some sleep too.....maybe even Mom! Have a great night and I will get some pictures out to you tomorrow. I love you all!

Thursday, March 27, 2008

Day 74!

Hello again everybody! I slept really good last night... pretty much 4 hours at a time.... which probably isn't good for you, but Mommy and Daddy will take it! I woke up and played some chess with Joshua this morning. Then Mommy whisked me off to do some shopping! We went to BabiesRUs and Wegmans - went to Grampa's for lunch - then back to BabiesRUs again... yeah, I dunno.. ask Mommy... some silly warranty thing or something... then finally back home. Mommy wants me to tell everybody that my eye is doing much better! It's not as goopy as it used to be and hardly ever needs to be wiped out anymore... which is good because I hated them doing that! Here's some shots of me after I had just taken a four hour nap! You can see my eye looks great!
So anyways... when I came home a lady named Michelle came over to meet me for the first time. She's a massage therapist and she's going to be working with me once a week from now on I guess. Today she was just feeling me out and getting to know me. She rubbed me a little bit but said that she'll do more next week. She told Mommy that she hopes to teach her a few things about how to help me relax and move my hands and other fun stuff. She told Mommy that she has a baby that's in heaven already.
While I was sleeping the family had the dinner that Ms. Stephanie brought yesterday and they said it was awesome! Now, I'm going to go watch Grey's Anatomy with my Mommy. Grey's Anatomy is to Mommy as Star Wars is to my brothers! We'll see which one I like better... I'll let you know... even though I pretty much have a hunch which it will be already!
P.S. Mommy's pouting... turns out that the person who told us that Grey's Anatomy was back on had their months off - not till April 24th! I guess I'll have to catch up on my American Idol and NCAA instead!

Wednesday, March 26, 2008

Day 73!


I got this card in the mail today. On the inside it says, "Dear Fahmer Family, I would like to thank you for all the beautiful scrap booking supplies and printer you purchased for the NICU at Women & Children's Hospital. I can assure you that they will be put to good use. Some of the items have already been put to use - some were used to make special memories for a family. The supplies helped make it so special. Once again Thank You for your donation! Linda M. Eschberger RNC & NICU Staff"
I awoke this morning to watch Star Wars Episode I with my brothers so that Mommy could get some rest. About half way through the movie we all realized that Mommy was not resting at all so we decided to go outside. I got all bundled up and into my speed racer stroller and raced Jonathan up and down the driveway. Mommy helped. In the course of racing Jonathan I also got into the hockey game between Joshua and Daddy and managed to make some stellar saves and sweet assists!
Later in the day Ms. Stephanie brought us some food so she could come and see me! She brought her own son Ian with her... but sent him off to play with my brothers so she could hog me all to herself. I fell asleep in her arms. Grampa came out to take Joshua to his golf lesson so Mommy gave me and Jonathan a nice warm bath. After I pee'd in my own bath water, Jonathan was nice enough to share some of his! Jonathan and Mommy tried to get me back in my swing again, but I'm just not a fan of that thing. I kept rooster crowing until they took me out! So then I had to help Mommy make dinner.... it wasn't so bad though! I spent most of the rest of the night snuggling with Grampa. He gave me enough love so that I could sleep a little bit longer for Mommy during the night tonight! Mommy and Daddy say, "THANK YOU GRAMPA!" :)

Very Busy!

Good morning my friends! I just wanted to let you know that I am doing great! I have not updated due to the lack of time....Mom and Dad are out and about which means I am out and about....in fact, Mom is ready to whisk me off again so I gotta run. Just wanted to let you know everything is great, have a great day, and we'll chat later. Love, Jacob

Tuesday, March 25, 2008

Day 72!

Been on the road most of the day so only one photo today... sorry. I went to the cardiologist for an echo. Ms. Peggy was there to take good care of me. She showed me my heart and I got to watch it and listen to it while she did her thing. It was pretty neat and kept my attention so that I didn't cry too much! My cardiologist came and reviewed the results of my echo with Mommy and Daddy. Bottom line is he thinks that my PDA ductus is still there and slightly open but that I'm not dependent on it. Due to the complexity of my heart I'm probably better off with the PDA the way it is or closed. The other cardiologist was considering putting in a shunt in the PDA to try and get my oxygen levels up since they've been hovering around 50-60%. This doctor thinks that putting in a shunt would increase my oxygen level but only at the sacrifice of disrupting my natural equilibrium. In other words, it wouldn't prolong anything, but would probably accelerate heart failure due to more oxygenated blood going to the lungs. He believes that due to my VSD hole in my heart, which allows the blue and red blood to mix and be pumped back into the body, my oxygen levels will continue to drop over time until eventually I turn into a smurf! Just kidding! My numbers will probably continue to go down but I could be "stable" in this condition for months possibly years. So... if things continue to go well for a while then we might reconsider, but for now I'm just perfect the way that God made me! Imagine that, right?

After my appointment we went back to Gramma's house to pick up my brothers and we ended up staying for dinner. Gramma's friend Ms. Bonnie came over to visit me too!

After the boys went to bed me and Mommy watched American Idol. I decided to sing along at parts. Most of the time I sound like Peter Pan singing the rooster song!

Monday, March 24, 2008

Day 71!

Happy 10 week birthday to me! Here's my 10 week birthday photo, what do you think? I sure have filled in a lot since the first couple of days, don't you think?
Should God allow it, I'm hoping to fill in a lot more in these next few days but I still need to get the hang of these new bottle things. Mommy was patient with me for over an hour and I ended up taking in about 23 Ml. I wish I could focus and fill my belly, but apparently I'm like my Daddy and I can't sit still for very long and am easily distracted! We always gotta be doing something and sucking on a bottle isn't nearly as exciting as say... sleep?! Mommy's persistant though and she's determined to make this work so I better start traying harder in order to make her happy. After all, she does so much to make me happy!
I watched another Star Wars movie with Daddy and my brothers this morning while Mommy caught up on some of her missed sleep. This afternoon Ms. Dolly and her son Josh and daughter Aubrey brought over some dinner for us...and they also brought their own lightsabres! My brothers had a great time having 4 way lightsabre duels. She also brought us some birthday cupcakes! You can see them in the photo or you might even catch them in the video. Everybody took turns holding me!
Gramma and Grampa even came over to sing happy birthday to me! Daddy was excited because they brought over ice cream... and so did Ms. Dolly! Daddy says, "Score."
Mommy forgot to give me a bath that she promised earlier today so I pooped all over myself. She didn't want to put me in the bathtub because I was very calm and sleeping... but she still got me naked and washed my body up. "Score."

Sunday, March 23, 2008

Day 70! Happy Easter!

Well Happy Easter everybody! Happy Resurrection Day! I pray that you had a great day with your families remembering that our Savior rose from the grave and conquered death so that we could have eternal life with Him! "'Where, O death, is your victory? Where, O death, is your sting?' The sting of death is sin, and the power of sin is the law. But thanks be to God! He gives us the victory through our Lord Jesus Christ." (1 Cor. 15:55-57) I was so excited about Easter last night that I kept Daddy up almost the entire night. Not to mention, this is the first time that Daddy's had me at night in a while, so I wanted to keep him fresh. He gave up around 5 AM and called in the cavalry. Joshua and Jonathan found Easter baskets this morning before we all got dressed up and headed off to church. Now that is one goooood looking family, isn't it? Don't you love my brother's pimpin' suits that they got from Uncle Mark for Christmas? Nana sent the cool shirts and ties from Texas!
At church I managed to spit up through my tube on to Daddy who was sitting next to me. It was so funny that Mommy had to get up and walk out! Daddy didn't think it was that funny. That was just the beginning of Daddy's troubles today though. We had to leave church early so we could get to Buscia's house for Easter dinner. After Daddy ate his dinner he was sitting on the couch trying to feed me my dinner. I think the lack of sleep affects Daddy a lot more than it does Mommy... he clipped my feeding syringe to his shirt and then started filling the syringe with my lunch... but he hadn't hooked up my feeding tube to the syringe! He covered himself with my lunch. I think Mommy's rubbing off on him!
Everybody enjoyed lunch and found some hidden Easter eggs and I got a chance to get my picture taken with Buscia's other great-grandchildren - my brothers Joshua and Jonathan, Emily, and Hannah! Aren't we precious?
From there we headed off to Great-Nana and Great-Papa's house. Here I met my Daddy's Uncle Jay and cousin Cal for the first time. My brothers think that Uncle Jay is hilarious... but I think he's kind of silly! I liked watching Cal though... and he liked watching me too... I think... he might have been trying to stare me down... one of those police officer tricks or something! Aunt Josie tried to hog me but since it was Easter she decided to share. I got to be held by Great-Nana and Great-Papa, Uncle Tony, and Cal. Matt-man still avoids me... more than Uncle Jay even who has the plague or something! Uncle Mark was still afraid of how small I was... doesn't he know that I've gained a lot of weight since last time he held me!
All in all it was a pretty exhausting day and on top of all that Mommy and Daddy are attempting to increase my food amounts... and my belly is not taking that all that well. Please pray that I'm able to increase my food amounts so that I can switch from eating every 3 hours to every 3.5 hours and maybe sleep through the night more.
On a sad note, my friend Eva passed away this morning. Sad for us... but glorious for her! Please pray for her family and stop over at her blog to encourage them during this hard time.

Happy Easter Photos!





































Saturday, March 22, 2008

Day 69!

Well, Happy Day-Before-Easter! At our house we started celebrating Easter already... so this morning when the boys woke up they started to notice that there were Easter eggs hidden all around the house! Apparently Mommy and Gramma had been busy while us boys were sleeping the night before. You should have seen how excited they were to do their Easter Egg Hunt! It almost killed them to have to wait for Gramma and Grampa to show up.... I didn't mind... I did some sleeping... As you can see from my pics! It was a nice sunny day here so I got some more tan time in! I also slept with the rabbits. Kinda like Joseph with the pigs in the Bible... only different.
:) I know that many of you out there commented that you were excited to see what I would do for Easter, and you really were expecting a lot, so Mommy had to help arrange me in some poses to satisfy your Jacob-craving. Don't worry... I'm just warming up... there will be more tomorrow!

So the boys found 34 hidden Easter eggs filled with money and candy and each of us got a stuffed doggy from Gramma and Grampa. Joshua's doggy is named Rick Sparkle Ryan Fahmer. Jonathan's is named Baby Sparkle, and I've yet to tell Mommy or Daddy what mine's name is... it's a secret. Mommy said to call it Ryan and Gramma said Spot but if you're good, maybe I'll let you in on the secret name that I picked out for him! I slept through the whole coloring of eggs thing.... and lunch... and just about the whole morning... boy is Mommy in for it tonight! Joshua and Jonathan took Dad to Walmart to blow their Easter money on Star Wars Legos while I hung out with Mommy and Gramma and Grampa. After they left, Ms. Teri showed up to visit. I did a lot of sleeping while she was here but we got a chance to snuggle for a little bit too. I slept through a lot of LEGO Star Wars battles, some book readings, a nap or two, dinner, some card games, and bed time stories. Mommy is DEFINITELY in trouble tonight! But I almost forgot! Some of the most exciting news for today! One of the reasons I'm so tired is that my nurse brought me my special needs Haberman feeder and I spent a couple hours sucking on that. I took a total of 34 mL orally! Sure, it took me a while but that's not a bad start for the first day! Mommy and Daddy are looking into finding some more somewhere in case I like this, so if any of you out there know of a good place to get them, let us know!
When I think about what Jesus went through for us here on this Earth prior to the miracle that is Easter, I'm encouraged and feel safe about the future. Thanks to His rising from the dead we have access to heaven through faith in what He did on the cross. And I know, because of the pain and torture that He endured, that heaven will be a wonderful place because He loves me. Please do not fear for my future... for I know Who holds my future in His hands... and He is Good. Think on this: (Philippians 2:5-11) "Your attitude should be the same as that of Christ Jesus: Who, being in very nature God, did not consider equality with God something to be grasped, but made himself nothing, taking the very nature of a servant, being made in human likeness. And being found in appearance as a man, he humbled himself and became obedient to death— even death on a cross! Therefore God exalted him to the highest place and gave him the name that is above every name, that at the name of Jesus every knee should bow, in heaven and on earth and under the earth, and every tongue confess that Jesus Christ is Lord, to the glory of God the Father." I look forward to seeing Jesus some day. I look forward to talking to Jesus. But most of all... I look forward to curling up in His arms and having Him snuggle with me. That's my God, who loves me.

Friday, March 21, 2008

Day 68!

Hi there everyone. Have you checked out the features on the side like the map......I need a geography lesson just to teach me where you are all praying for me from! You guys are everywhere and man do I love you all.....all 50,000 of you.....did you see the counter?...it is over 50,000....I know many of those hits are because you hit refresh 1,000 times on the days I am late posting, but still, there are lots of hits. Thanks for loving me so much through this blog. You guys are the ones that keep me going....your prayers....and your anticipation of the blog keeps me and my family creative and fun which helps us make more treasured memories....thanks to you all.

Oh, keep praying for my friend Eva (you can see her update at http://www.evajanette.blogspot.com/) ...she is taking big steps forward so keep up the prayers. We Trisomy babies are here to see God work and do BIG things through little lives.....it is amazing....make the most of our little lives.

Well, last night was pretty good. Mom managed to get some sleep....interrupted only once to feed me at 4am.....but other than that I slept good and it was in my bouncer and not on Mom so that was good for her. She just loves me so much and knows how much I loved to be held, it is so hard for her to leave me alone....you can all see that would be difficult...you don't find these fine looks just anywhere. But really, with my diagnosis and them not knowing when things could go south for me, she just doesn't want me to be alone....heck, I don't want to be alone, so we just hang out and treasure each other.....it's great.

So, we had some guy come Monday to "fix" our wash machine (which still ran....loudly...but cleaned clothing) and he cut his hand real bad and never showed back up for a few days and then when he did come back he didn't have the right parts....the story goes on but the gist of it is that we do not have a working washing machine. Now, for those of you who are parents (who do the laundry), you understand how much laundry a little guy like me can make let alone 2 other boys....so the laundry was crawling up the walls....I thought I was going to get lost! So, my Daddy had to make a run to the laundry mat while Mommy took my brothers to a dentist appointment. This was Mom's first outing with her 3 Little Men on her own. She did pretty well. I hung out in the carrier while my brothers got their teeth counted and polished....man, I can't wait to get me some of those pearly whites! So Mom WAS doing great UNTIL it was time to feed me. Now, most of the times Mom does pretty well with my feeds on-the-go but today was an off day. She managed to spray me all in the face again but this time with force!....the syringe she was using was stuck (so she thought) and so she just kept pushing harder and harder while it was right above my face.....she probably should have pointed it in a different direction...NO...she definitely should have pointed it in another direction ......BECAUSE it finally gave in and misted fortified breast milk all over the interior roof of the car, me, Joshua, Jonathan and herself. Not funny. She is quite talented. She uttered something I wasn't supposed to hear, wiped it up and we went on our way....I was extremely mad at her though....with good reason....and almost overflowed my tube but I decided to forgive and calm down....life is too short for grudges. We then headed home for a quick lunch with the Laundry Man (Dad) and then headed to an Easter Party with my brother's homeschool friends. Dad went to work and Gramma came over to spend the evening with us....well she mostly just held me. But this helped Mom get Joshua and Jonathan in for the night.

So, good news....my nurse found some kind of feeder that may help me bottle feed a little bit better so she is going to bring that by this weekend so we can try it out. I also have another one of my friends checking into a speech therapist for me to see if they could help me....anything to get this tube out. So pray that I can build my endurance for bottling.....I kind of get tired after 1/2 ounce and sometimes my color goes bad....but I hope this changes for the better with practice.

Well, once again, Daddy is at work and Mommy just isn't technologically advanced enough to get those pictures on here, so maybe we'll get some good Easter ones tomorrow and Sunday.

Don't forget what Easter is really about....CHOCOLATE....oh, ....no no no.....although chocolate is amazing (so they say....well Mom at least) it is about something so much bigger ....it is about the Creator of the Universe dying on a tree for our sins and raising from the dead to vanquish sin and death. Wow! That is a far greater gift than I can even imagine! Accept this gift and live life to the fullest. God bless you this weekend as you celebrate our Savior's unfailing love.

Thursday, March 20, 2008

Day 67!

Well hello there everybody! You're lucky you caught me awake... I did a lot of napping today! Me and Daddy watched a movie together this morning. I slept through most of it. Then me and Daddy watched the NCAA basketball tournament most of the afternoon together. I slept through a lot of that too.... but I did learn some things. I learned that each team has a mascot... like a blue devil or a bulldog. If I was on a team I would want it to be the Cowboy Donkeys. Wouldn't that be a great mascot for a team? If I was the coach of the Cowboy Donkeys and I was losing a game, I would probably look something like this:

I also learned that people take this game so seriously that they throw their bodies on the ground trying to chase down a silly ball. I wondered what that would feel like so I got Daddy's ball and tried it out for myself. I didn't get it. Didn't feel the rush. Didn't get my adrenalin flowing. No one stood up and clapped. It just hurt. I learned that people actually spend hours of their day trying to figure out who's going to win a game weeks in advance. They obviously don't understand the value of living each day as if it were your last. They could learn a thing or two from me. Who knows if you or those players will even be around weeks from now!??! But wouldn't you know it... Daddy tried to guess the winners too? Silly Daddy. Must be his love for the game... he used to play back when he was in school. And he's doing ok so far on his prognostications too... 12 for 12...50 or more like that and he could win $5,000,000 - (YEAH RIGHT!) :)
I also learned that there were these crazy people called "fans" that go to these games and jump up and down and yell and scream and paint their bodies different colors and spend tons of money on tickets and travel and food and who knows what else! So I decided to share with you a picture of what I would look like if I was a Cowboy Donkeys' fan at one of these games. Here I am cheering and shouting for my favorite player! "Go my favorite sports team!"
One thing I did admire watching these guys play this game is the way they gave it their all in everything. Kinda like we should with life and serving God. Don't hold back. Don't leave anything in the tank. Go big or go home. Go strong... life is better with blood sweat and tears.... and all that kind of stuff. I wonder if these guys even realize that they are glorifying God just by running up and down that court? Did you ever think about that? They are showcasing the majesty of God and how fearfully and wonderfully the human body is created to do such incredible feats. Maybe that's just the line that Daddy gives Mommy so he can sit around and watch the game all day... :) Seriously though when you think about it, you just being able to breathe or walk or talk or think is something amazing that shouldn't be taken lightly because so many of us may never be able to do those things and would never take them for granted. So many people would give anything for the chance for their child or for their friend or for themself to be able to have just one day with all those things that you take for granted. Thank God right now for the way He made you.

Day 66

Hi y'all. Sorry it has taken me so long to get to you. Daddy was at work and Mommy...well she was just plain-old exhausted. So better late than never. I want to start by asking for prayer for my new friend Eva Janette. She is a Trisomy 18 baby like myself who was born on Monday and she is going through some rough stuff. You can visit her and her family at http://www.evajanette.blogspot.com/ . Please pray that her family will get to love her for the rest of her time here on this earth which does not seem to be very much longer as pictured by her mommy Chrissy.....pray that she is wrong and that she will have many healthy days.

Well, my day was pretty good. I hung out with Mommy all night and then hung out with Daddy, Joshua and Jonathan all morning. Then Mommy took me to the doctor's for my visit....and guess what.....you'll never guess......they weighed me in.......just take a wild guess at what I weigh.......it's just a crazy number....ok....you ready?....really ready?.......well I am going to make you wait :) The visit was good. We talked about a few questions to ask the cardiologist next Tuesday and then he said he was "amazed" at how well I was doing. He said that "I" am in control of what is going on and that I am functioning so well.....we all know that it is really God who is giving me the strength to hang out here longer with you all....I have no control for God is the giver and taker of all life. We just have to make the most of the life He gives until He decides to take it....and that is just what I am doing. So you want to know what I weigh??? Still gotta wait :)

So after the doctors, we just hung out at home. Dad headed off to work for the evening and Grampa came and took Joshua to golf, they came back for some dinner of leftovers (Mom has not been quite the cook....she has her hands full with me....literaly....but who would have it any other way:). Then we all headed off to bed. I slept ok on and off....that makes it tough for mom...she says I have my nights and days mixed up but she loves me all hours of the day so she deals with it. It is wearing on her a little though....good thing she has Daddy to hang out with me so she can sleep.

Ok...so you want to know what I weigh....... NOW are you ready for this??? Here is my BIG weigh in number:

5 POUNDS 2 OUNCES!!!!

YES ladies and gentlemen.....not only did I break the 5 pound mark but I exceeded it. They always said I was an overachiever :) Aren't you impressed!??!?! Keep up the prayers....they are working...I am getting bigger and stronger and hungrier ever day. Thanks so much for loving me.

Tuesday, March 18, 2008

Day 65!

Joshua got up before the sun this morning to come see me (and Optimus Prime) and Daddy wasn't far behind him. After spending the morning together as just boys Mommy got up and Ms. Beth came over to make some more memories with me and my brothers. Today we made a concrete stepping stone with my name and footprints in it. Joshua and Jonathan then decorated it with different color rocks, marbles and glitter. I'll try to put a finished product photo on the blog once it's all dry. I was totally fine with sticking my feet in it, but Jonathan didn't like getting his fingers dirty at all!
As Ms. Beth was walking out the door, Ms. Chrissy and her daughters, Delaney and Chloe, along with Ms. Tammy came walking in! How exciting! It's been a while since we've had back to back visitors! Chloe was so excited to see me. She kept saying, "Baby Jacob. I love Baby Jacob," and wanting to touch and hold me. Her Mommy says that she has actually renamed all of her dollies at home Baby Jacob. Boys and girl dollies alike! I guess that's okay! I got passed around a lot, but mostly Ms. Tammy hogged me! That's okay... it was her first time at our house and I don't think she's held me since the hospital. Ms. Tammy brought her autoharp and the girls all sang to me. Check out the sweet medley video on the sidebar. There's also some great video of me and Chloe and stuff from St. Patrick's Day if you missed it!
I managed to pull my tube completely off my face again so we tried taking a bottle again this afternoon. I drank about 10 Ml and then got bored and tired so I started playing with it instead. Not where I need to be, but better than nothing I guess! Mommy took me for my first shower. I'm still not sure how I feel about it. At first I really didn't like all those water drops hitting me all over my body. But, as it got warmer, it reminded me of a bath and so it wasn't so bad. Still has that terrible ending though - where they pull you out of that nice warm place and into a cold room and wrap you up with a rough cold towel! Blach! That almost makes the whole experience not worth it. Almost. I love my baths way too much to give em up! Mommy wasn't real keen on the whole experience either... she said I look like a cute little fuzzy cat until you get me all wet and then I look like a pitiful pathetic little wet cat! She says it lovingly though! :) We'll just stick to baths from now on!
Ms. Heidi and her family brought us over dinner which we enjoyed and then had movie night together as a family (which I slept through most of... that's ok, Mommy says I didn't miss much!) Hope you have a great day!

P.S. Chloe says,
"PEACE OUT!"

Monday, March 17, 2008

Happy St. Patricks Day! Day 64!

Happy St. Patrick's Day everybody! Here's a shot of our family from the "top of the mornin'" - Look at those 3 cute leprochauns in the front row! While we didn't have green eggs and ham, or green jello, or green pancakes, or corn beef, or reubens or ham and cabbage or pretty much anything "Irish" - and Aunt Melly called to yell at us since she sent all this cool other St. Patty's Day stuff - we still had a fun day! From what Daddy has told me of what he recollects from his childhood of St. Patrick's Day all the Irish people get together and sing songs you can't understand, drink lots of beer and eventually pass out. So here's my impression of what a drunkin' Irishman looks like: pretty funny, huh?
Aunt Melly sent us all this green stuff. Here's a shot of my favorite piece - the Baby's First St. Patrick's Day bib! Only Aunt Melly could find something that cool! The last couple of years Mommy, Daddy and the boys have flown to Texas to spend St. Patrick's Day with Nana, Papa and Aunt Melly. Everybody there missed us this year - especially Marissa. I've never met my cousin Marissa, but I hear she really loves my brothers! She called and talked to them on the phone today. She sounded really cute. Speaking of cute, what do you think of me in this hat?

So Western New York isn't nearly as warm as Texas on St. Patrick's Day and I got to thinking about all my friends who have been writing to me from sunny warm places like California and Hawaii and wherever else... so I figured I should take a road trip and go visit people in warmer climates than mine. But... in order to do that I would first have to work on my tan. Can't be looking like Casper out there. So this afternoon I started working on it.... Look out ladies! Ok, honestly, Mommy did this to me while I was sleeping! She's trying to help me get rid of my jaundice coloring. But man do I look cool.... Ladies' Man! Superstar!
Gramma came over to celebrate my nine week birthday and Ms. Kelly brought over some yummy dinner. She brought home-made bread that even smelled good to me! How do all these people know Daddy's favorite foods?!?! Maybe Daddy just likes everything! She also brought us some massive birthday cupcakes decorated for Easter. You'll have to check out the hilarious video of my brother Joshua and his wonderful singing around the cupcakes. Yet another great day celebrating life. I hope you had as good a St. Patrick's Day as we did! Here's a famous Irish blessing for you until tomorrow: "May the road rise to meet you, May the wind be always at your back, May the sun shine warm upon your face, The rains fall soft upon your fields, And until we meet again, May God hold you in the palm of His hand."