Born: Aug 20/03 at 12:37 ~~ Became an angel Feb 19/05
Weight: 9lbs 2.6ozs Length: 21 inches
My name is Jacob and I was born August 20, 2003 weighing in at 9 lbs 3 ozs. My mom and sister Alyssa didn’t think anything was wrong because at first I could kick my legs and move my arms a lot. However within a few weeks my mom started to notice that I wasn’t accomplishing normal physical skills, and the skills that I could do at birth I could no longer do. On January 9, 2004 I was diagnosed with a neuromuscular disease called Spinal Muscular Atrophy(SMA). This disease destroys the nerve cells that control my muscles. Such skills like crawling, walking, sitting, head and neck movement and now swallowing I can no longer do. My family found out that I had type 1 SMA which is most severe form of SMA. Most children only live to see their first or second birthday! My mom and sister Alyssa didn’t like this idea at all, they want me to be here a lot longer than one or two years. So my mom, Nana, and my Great Aunt went to New Jersey to see a special doctor; Dr.Bach. He has given my family hope that if I receive the help of some machines I could live a lot longer. I am now eight months old and survived through 2 pnemonias, 4 colds, RSV, a collapsed lung and a major surgery to have two tubes placed in my stomach so that I can now receive my food through them cause I can no longer swallow. 24 hours a day I am receiving food through a feeding tube called a GJ-Tube, I also have a G-Tube. I am always hooked up to a machine to monitor my heart rate and how much oxygen I am receiving. Every time my heart beat goes faster or slower or my oxygen drops a loud alarm goes off. Boy does my mom get worried when that happens. I also have a suction machine to use because I can’t swallow anymore. My Bi-Pap machine is used at night and when I have a nap to help me take deep breaths. My neubulizer is used over my nose so I can breath in medications. I also have a cough assist machine to help me cough because my muscles are so weak I can't anymore. Although I will never be able to eat food in my mouth or crawl or walk, my life is full of so many happy memories with my family. There are special toys and strollers that I can now use to help me get around. Every day after school my sister plays with me. She puts music on and dances around the living room. It always makes me laugh. Even though I am only 8 months old I have already been on the news 8 times and in the newspaper 12 times and I even had my very own fundraiser. Once the summer gets warm my family is going to plan a walk to raise money for some of my machines and as well as research for finding a cure for SMA. God gave me this life and I hope to make as many happy memories as possible.
~~~SMA is the number one genetic killer of children under the age of two~~~ ~~~As many as one in 6,000 babies born is afflicted with SMA~~~ ~~~As many as one in 40 people is a carrier of the SMA gene~~~ ~~~The chance that both parents are carriers is as great as 1 in 1,600~~~
Jacob has been added to a special website called Coles quilts. This is run by a special group of people Coles mommie Kristin started the idea and Linda and Laura look after the website. Please visit this site and see the special work these stichers do for our kiddos! The time and effort they put into the quilts is unbelievable. Thank you for adding Jacob to the site. Click here to see itColes Quilts
~~~~~PRAY FOR A CURE IN 2004 ~~~~~
KISS YOUR CHILDREN EVERY DAY AND TELL THEM YOU LOVE THEM. TODAY IS GONE, AND TOMORROW MAY NEVER COME!
A quote borrowed from another mother "Most people never have the opportunity to see an Angel, or simply do not look well enough to see them walking among us. This, however, does not mean that they don't exist. Me, I'm one of the lucky few. Not only have I seen an Angel, I call him my son. He is my "Angel-on-loan."
These photos were taken Feb 19/05. I know the date on the camera was wrong. These were taken the afternoon before he passed away. Some of the most beautiful photos we ever took of angel baby bear. He was happy, content and you would never know that these were the last smiles, kisses or hours I would be able to spend with my angel. Maybe Im lucky that way. Maybe it was sopposed to happen that way. I guess I should feel lucky that he didnt suffer at the end. My angel just drifted off to be in Gods arms. Miss you angel bear. Love you to pieces and cant wait to be able to hold you in my arms again.
These are the Bracelets available for raising funds for Research This money goes to find a cure for SMA
This is Jacobs stone finally completed.... I would rather have him in my arms... but this I believe does him justice...
Me and Alyssa at the 2nd annual Candle lighting in VA
Journal
Wednesday, October 1, 2008 8:04 PM CDT
Wow Im sorry everyone. I have gotten a few emails from people wondering how everything went and how our new baby girl is!!! Im sooooo sorry everyone. We are busy.
To start! Baby Kate Leah Mifflin was born Aug 24, weighing 6.8 oz. She is healthy and pink and beautiful. If your wondering if she looks a lot like Abby well nope! She is everything opposite to Abby. Dark, dark hair, deep blue eyes. Darker complection, skinnier, and all her features are different. LOL Its so cute. She threw us right off. I was expecting to have two little blonde girls looking almost like twins when they were older cause they are so close in age. But nope! They will be just opposite. Everything about her is different. She sleeps totally different, she cries different lol. I know I know that they are different kids so I should have expected that. LOL
Anyway she is now 5 weeks old and doing so much better. I was induced a week early as she was not gaining weight so they wanted to get her out and make sure everything was ok. She is starting to sleep more, man she was a really fussy for the first few weeks. Scott and I were going on 2-3 hours sleep every day for ever. The first week of school we all got sick. Like endless boogers and phlem sick. It was awful. All six of us were sick for a good 2.5 weeks. Finally we are healthy again. Even the baby was sick. I have never seen a baby get sick before??? Weird. To be honest I am glad the baby is getting a little older. These last few weeks have been tiring. With being so sick, and getting no sleep, between Abby getting up through the night (our fault) and the baby eating all the time and being mixed up with her days and nights we were totally exhausted. To the point I let mom take over last weekend. I let her have abby overnight on the Fri and she took Kate for us Sat. Long story but I had to stop nursing Kate at 4 weeks. It was that or go insane... very disappointing. But for my sanity I had to switch her. I just couldnt do it anymore. So we were able to get a couple good nights sleep and finally this week Kate has figured out that there is a night and a day! LOL YES THANK YOU!!!! Now we are starting to come around. We get about 4-5 hours a day now. Believe me those extra hours help so much.
Ok back to the Abby story. She was (ahem) in our bed, lol, until a few weeks before Kate was born. So we always were able to say that Abby slept through the night. When really all those times that her soother fell out and we would just give it back to her or she rolled over and just seen us there she was getting up, not sleeping through the night. Now that she is in her own room we have the moniter on and she wakes up crying and we have to go to her room and lay down with her for a bit. So just b/c we loved to cuddle Abby so much we are paying for it now. But she is getting better. We are not putting Kate in our bed. Its easier to not have her in our bed now because Im not nursing at night, so we dont fall asleep in bed together.
The older kids are doing well. Kyle is in high school this year. Wow I can't believe that he is in grade 9. I think he is enjoying it. You know 14 year olds, the most you get is that school was fine!!! Alyssa is loving grade 6. Im so proud of her, she is getting so involved in school now. She is helping with the website and doing announcements and stuff this year. Our kids are so good at school and that we are so proud of. Kyle is in hockey again this year and Alyssa is doing hip hop and contemporary dance. So yup we are busy.
Keeping up with a 14 month old and entertaining her while trying to learn about Kate and feed her and give her all the love and snuggles she needs is hard to say the least. We have had a blessing in disguise. Scott was laid off, his place of work after him being there 14 years has shut down. So he is off work and is home and able to help me with all the kids. I tell you I would not be able to do this without him here! He helps me get through the days and get everything done that needs to get done. I really just cant believe how busy it is with 4 kids. Believe me we are sooooo beyond blessed. We know something will come along for Scott we are not too worried about that. Im more worried then anyone of course. Im a worry wart. He thinks its for the best and will get something even better now that he is looking.
Anyway there are so many people out there that cannot have children or have lost their kids and we know how blessed we are. We are thankful for our health and for the 4 beautiful children we are raising. Our future is bright, we are so very happy and full of a house with love. Sometimes we are cranky, sometimes we say things we dont mean or that may seem harsh at times. We are not perfect. We all have faults. But together we are a family that has overcome so much in such a short period of time. I know Jacob has been here with us the entire time. I know Jacob is looking out for all of us.
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