supernoahjacob supernoahjacob

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Super Noah Jacob  "There's nothing down about Down Syndrome" Born with Super Powers and lots of love from Mommy #Trisomy21, #CHD, #VSD, #MulticysticKidney, OSA

Happy Sunday!

Next Sunday my baby will turn 1...I'm already emotional 😭

I remember when he didnt like pacifiers..then a doctor said it would be good for him to take it for tongue control. Noah has an enlarged tongue due to his Down Syndrome. I think since he began feeding/speech therapy, he's doing so much better. He sticks out the tongue more when he gets excited or happy but other than that he keeps it in his mouth. Sometimes I imagine him as a teen or adult sticking his tongue out like that and try to push him to keep it in his mouth. So I was what age do you think I should eliminate the pacifier?
#ds #dsb9aby #downsyndrome #pulmonaryhypertension #1in100 #Tri21 #Trisomy21 #extrachromosome #chosenfew #extrachromosomeextracute #nothingdownaboutit #downrightperfect #cutiepie #newborn #zipperclub #heartwarrior #miraplex #downrightperfect #rockyoursocks #downsyndromerocks #downsyndromelove #chdawareness #chd #chdwarrior #vsd #babysfirstchristmas #xmas #frobabies @kids_slay #buybuybaby #carters @newyorkmodelskids

The reality of having a medically challenged child. It's a domino effect on your life but you can put the pieces back together. I refuse to stay down. There were some losses but God kept and provided us with the things we really needed ❤ #throw🔙thursday
#ds #dsb9aby #downsyndrome #pulmonaryhypertension #1in100 #Tri21 #Trisomy21 #extrachromosome #chosenfew #extrachromosomeextracute #nothingdownaboutit #downrightperfect #zipperclub #heartwarrior #downrightperfect #rockyoursocks #downsyndromerocks #downsyndromelove #avcanalrepair #chdawareness #chd #chdwarrior #vsd @theellenshow @goodmorningamerica @willsmith @oprah @dr_oz @tylerperry @diddy @rightthisminute

Forget the 10 year challenge...check out my 10-month challenge 🤩

Insurance company did not approve payment for wiggle pads so now I have to fight for coverage because they won't allow me to purchase them which doesn't make sense to me. If only Noah knew how important it is for him to stop pulling them off his face 😞

Guess who's turning 1 in a couple of weeks?!
So many people love Noah and have asked what would be a good birthday gift for or an actual gift item. I thought about it for some time and wanted to think of something that he really needs and/or can help make our lives a little more easier.
In November, Noah was well enough to travel after his second heart surgery. We were blessed to be able to travel out of the country for Thanksgiving and recently traveled to Atlanta for the Christmas Holidays. Both times we had to rent a portable oxygen concentrator and extra batteries that are required by the airlines. The cost to rent this is about $300-400 minimum per trip. I looked into purchasing this particular device to avoid rental fees every time we travel and the cost is around $2500-$3,000. When I think of the benefits that this will have for us and our little guy, I can't help but imagine the stress that I felt in the past when his oxygen tanks were not delivered on time and caused us to cancel doctor appointments or forced us to stay home for days.  This oxygen concentrator will not only be used for travel , it will also be used for all outdoor activities, including doctor visits. The benefits of this machine is that it is easier to get around with than the bigger portable oxygen tanks that are provided to us by his insurance and that are not allowed for airplane travel. There are other gifts that Noah can receive on his birthday but I truly believe that this is the most beneficial and one less financial burden for us to deal with.

Any assistance with this would be greatly appreciated. This year I would love to do so many things with our little guy. I know having this machine would make our trips much more enjoyable.  Thank you in advance for your contribution to this birthday gift.

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When I was counting down the weeks to Noah's birth... #MyMiracleBaby #GodsBlessing #pregnancy

A lil Snapchat fun with mommy's cuddle partner 😘

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