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#gtubekid

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I always get sensitive this time of year. Six years ago today the doctors found out Isabella had an phemonia caused by server asiparation issues. They said she would have died within the week if I didn't stick to my gut and bring her to get checked. She had her first (emergency) surgery to clear her throat of all the extra tissue that was causing this problem. She then had a NG-tube for 8 months. (That I would change once a week by myself) We also found out she has a duplication in her 12th chromosome (which could be the cause of her aspiration issues) that has never been discovered before. I wrote N.O.R.D which is the National Organization of Rare Disorders and they confirmed she is the first case of this duplication in the WORLD! There are other cases similar to Bella's but noone has this exact duplication. I'm sharing all this because six years ago today they didn't think my baby would talk. They had no idea If she would be a functioning child . They thought the worst!
Today Isabella graduated Kindergarten and is moving up to first grade. Evan tho it's only Kindergarten it means so much to me that we've made it this far. She can do so much that they thought she wouldn't be able to do. I'm going to continue to research and contact as many doctors as possible to see what this duplication means. Remember a chromosome cannot be removed , there are no transplants God forbid. It is there forever. So I will forever make it so she is comfortable and continue to live this positive lifestyle that we live. Isabella you are my strength. You saved my life so I'm dedicated to save yours. 😘

So keep your Faith up. Stay positive and peaceful. Anything is possible when you believe in it. And I believe my daughter will make it to her college graduation and live to see many more positive things. 🌼🌸🌹🌺🌻 #Gtubekid #duplicationchr12 #raredisease #TeamFancy

Final #Surgery done thank God. He's resting with lots of morphine

#gtubekid #gtubesurgery #fnhairnfaith #finenaturalhairandfaith

This guy was quite the character today... We special ordered him this dinosaur backpack to try to get him excited about wearing it while his feed is running. #missionaccomplished #gtubelife #gtubekid

It may take her 10 bites and 20 minutes to get a 1/2 Tbl, but my girl is eating!!! #tubiebaby #tubiebaby #gtubekid #gtubeawareness #gtubefed

When you have the best big sister and brother they push you around the yard in your new wheelchair, they talk to you and they play music for you. #cp #epilepsy #gtubekid #specialneedsadoption

Oh I want this girls eyebrows. They are perfection. Her #gtube pokin out. #gtubekid #perfectbrows #rettsyndrome

The greatest Christmas gift of all!! Lucas had his first EVER Christmas dinner with the family. He didn't last long but tried everything on his plate. #merrychristmas #makingmemories #firsttime #gtubekid #proudmom

Today is the two year anniversary of Orson's g-tube placement! He also ran into his Fairy Godmother that day. Slink into bio for blog link. #cfisnotforever #gtubekid #kingofbrave #Godshareshislove #fairygodmothersarereal

chocolate Cheerios & Me #gtubekid #gtube #tubefed #vacterl #highchair

MOST RECENT

When they get caught and they give you that smile πŸ˜ƒπŸ˜πŸ˜˜ #tubielife #gtube #gtubeboy #gtubekid #tubie #tubiemom #tubieboy #tubiebaby #gtubebaby

I always get sensitive this time of year. Six years ago today the doctors found out Isabella had an phemonia caused by server asiparation issues. They said she would have died within the week if I didn't stick to my gut and bring her to get checked. She had her first (emergency) surgery to clear her throat of all the extra tissue that was causing this problem. She then had a NG-tube for 8 months. (That I would change once a week by myself) We also found out she has a duplication in her 12th chromosome (which could be the cause of her aspiration issues) that has never been discovered before. I wrote N.O.R.D which is the National Organization of Rare Disorders and they confirmed she is the first case of this duplication in the WORLD! There are other cases similar to Bella's but noone has this exact duplication. I'm sharing all this because six years ago today they didn't think my baby would talk. They had no idea If she would be a functioning child . They thought the worst!
Today Isabella graduated Kindergarten and is moving up to first grade. Evan tho it's only Kindergarten it means so much to me that we've made it this far. She can do so much that they thought she wouldn't be able to do. I'm going to continue to research and contact as many doctors as possible to see what this duplication means. Remember a chromosome cannot be removed , there are no transplants God forbid. It is there forever. So I will forever make it so she is comfortable and continue to live this positive lifestyle that we live. Isabella you are my strength. You saved my life so I'm dedicated to save yours. 😘

So keep your Faith up. Stay positive and peaceful. Anything is possible when you believe in it. And I believe my daughter will make it to her college graduation and live to see many more positive things. 🌼🌸🌹🌺🌻 #Gtubekid #duplicationchr12 #raredisease #TeamFancy

When some mornings go how you don't want them to. Broke the cap off and couldn't get the end out of the extension πŸ˜‘πŸ˜‘πŸ˜‘ #gtube #gtubefed #gtubekid #gtubebaby #gtubeboy #tubie #tubies #tubefed #tubiekid #tubieboy #tubieproblems #gtubeproblems #feedingtubelife #feedingtubeproblems #tubielife #gtubelove

#flashbackfriday he was three and a half months old and barley 9lbs. He was a very sick baby at this time. After this picture was taken a week later he got his #ngtube and within a few days everyone could see the difference in him. #feedingtubessavelives #feedingtubeawareness #tubie #tubiemom #gtube #gtubebaby #gtubekid #tubiekid #tubefed #tubiebaby

What a huge bed hog!!! (Please do not bash. We are on vacation and he's sleeping in the same bed as I. If any bashing takes place you will be blocked) #gtube #gtubelife #gtubebaby #gtubekid #gtubeboy #gtubefed #tubie #tubies #tubefed #tubiekid #tubiemom

It's weirdly fascinating watching your child change sleeping positions. This is a new one for ari. Every once in a while she'll wiggle her butt, which is the best thing ever. #socute #beingaparentisweird #specialneeds #gtubekid #thatdoesntlookcomfortable #bestkidever

No words for how much I love this babyπŸ’–πŸ’–πŸ’–πŸ’–πŸ’–πŸ’– #feedingtubelife #feedingtube #tubefeeding #tubefed #tubie #tubefeeding #tubieboy #tubiemom #tubiekid #tubiebaby #gtube #gtubefed #gtubeboy #gtubekid #gtubebaby #gtubelife

Last day of PT for a whole month. Break time! πŸ’– he will still be doing feeding therapy even though he can't actually eat by mouth. We are gonna just work on oral skills with different types of exercises. #gtubekid #gtubelife #gtubebaby #gtubeboy #gtubefed #gtube #tubie #tubefed #tubies #tubiemom #tubiekid #tubieproblems #tubieboy #tubielife #tubefed #tubefeeding #feedingtube #feedingtubelife #feedingtubeawareness

This is a still of his pudding thick consistency part of his swallow study. The dark line and spots are the barium. He has a hard time swallowing it and it sits in his throat and puts him at a very high rust of aspirating pudding thick consistencies. They only gave him the clear for just tastes. #tubiebaby #tubielife #tubiekid #tubiemom #tubie #tubefed #gtube #gtubefed #gtubeboy #gtubelife #gtubebaby #gtubekid

There are definitely some benefits to tube feeding. Every morning this kid gets breakfast in bed and most of the time he's sleeping through most of it. All he needs to worry about is getting dressed. #gtubekid #tubefeeding #tsc #breakfastinbed #benefits #specialneedsmom #sleepandeatatthesametime #simplemornings #focusonthepositive

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