tag:blogger.com,1999:blog-8581317431133132518.post6444194890085956892..comments2023-07-25T06:31:22.641-05:00Comments on Jude; The diary of a baby and a stroke: yet another updateJennifer Ortizhttp://www.blogger.com/profile/14350225247489608653noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-8581317431133132518.post-3182271160134836852009-08-19T19:12:09.133-05:002009-08-19T19:12:09.133-05:00oh Jenn, I'm so sorry you are dealing with thi...oh Jenn, I'm so sorry you are dealing with this. I will be praying for sweet Jude. Have you tried adding Duocal to his food. May not solve the issue but has helped Grace gain weight.<br />xoxoJacolynhttps://www.blogger.com/profile/14966291460929695590noreply@blogger.comtag:blogger.com,1999:blog-8581317431133132518.post-19653117803344564502009-08-19T08:44:08.510-05:002009-08-19T08:44:08.510-05:00Hi Jenn,
I am so sorry that you have to endure thi...Hi Jenn,<br />I am so sorry that you have to endure this. It is a very difficult situation to be in.<br />One of our friends has a daughter with Turner Syndrome. She had a G-button until she was 3. They still fed her at the table with the rest of the family and then tubed the rest of what she needed to eat. Eventually, she was able to take everything by mouth and the G-button has been a thing of the past for over a year now. <br />Even though it isn't permanent, I'm sure you feel it is a step backwards. I sure hope things will settle and he begins eating again. <br />My thoughts are with you and Mike during this stressful time.<br />Love to Jude and Emily!<br />Parker & Amy Hendrix<br /><br />PS - When we were at Duke for Parker's second infusion, we met a lovely family from Philadelphia who had a 3 year old daughter that had a stroke in utero. I couldn't tell anything was wrong until they pointed out that she has problems with her right side.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8581317431133132518.post-79011630702278700432009-08-19T08:23:32.580-05:002009-08-19T08:23:32.580-05:00what a roller coaster ride. you can vent anytime y...what a roller coaster ride. you can vent anytime you want, about anything! i wish there were words to comfort you, just know we all care about your family.andreanoreply@blogger.comtag:blogger.com,1999:blog-8581317431133132518.post-80169695564406256982009-08-19T07:13:11.511-05:002009-08-19T07:13:11.511-05:00NO one ever understands, not even doctors, until i...NO one ever understands, not even doctors, until it's their own child. Sometimes these things are so hard to wrap our minds around... a child who won't eat? It just defies logic. I still can't explain it. Still praying for you and for Jude...Candacehttps://www.blogger.com/profile/04201448627487443779noreply@blogger.comtag:blogger.com,1999:blog-8581317431133132518.post-70346989426407025912009-08-19T02:58:48.193-05:002009-08-19T02:58:48.193-05:00I know this is one of the last things Jude has tha...I know this is one of the last things Jude has that is "normal" and it seems to be slipping away. I understand. With Caleigh, she has never been able to eat due to her intestines, but I do understand. <br /><br />You will have to look at this positively. Jude's brain needs nutrients to thrive and grow. When he is refusing to eat, he is starving his body of those nutrients. From your posts, I can tell you and Mike struggle with feeding and fluids daily. Just imagine what Jude's body will be able to do if properly hydrated and nourished?<br /><br />After Caleigh's last surgery she developed compartment syndrome. Her body was retaining fluid, her kidneys stopped working, lungs stopped and her heart was shutting down. Her body, instinctively took all the circulation and blood to her head. Her head was bright red while the rest of her body was blue, then purple, then grey. Her body knew what was important...the brain. <br /><br />Get the analogy? <br /><br />I know it's hard, but don't look at this like an end all to feeding. Make sure Jude is in a good feeding program...don't stop feeding by mouth and he could very well out grow this phase. <br /><br />Good Luck and I hope tomorrow is a better day!Hollyhttps://www.blogger.com/profile/06461570847275489646noreply@blogger.comtag:blogger.com,1999:blog-8581317431133132518.post-78858092928147117442009-08-18T22:47:52.622-05:002009-08-18T22:47:52.622-05:00Jenn, Mike, Em and Jude,
I know the thoughts that...Jenn, Mike, Em and Jude,<br /> I know the thoughts that are going through your head about the g-tube. I fought Finnian's for almost a year. I know where Mike is comming from the frustration and helplessness about trying to get some form of food in the child. I used to syringe peidasure into Finnian when he wouldn't eat. He was always congested due to aspiration.At the peds suggestion I took him to a pulmologist he suggest the g-tube then I had to take him to the GI and he suggested the the tube so here I was I had 4 doctors telling me to get a g-tube it would give him a better quality of life and it would save my sanity. I finally gave in and he got his g-tube. Now I know he is getting all of his meds. Because of his g-tube we were able to do the keto diet because he needed the formula verision as he was not taking in enough solid food by mouth. Now when he is sick I can still give him fluids and he doesn't need to get IV fluids. Its scary but worth it in the end.You can just use it for his meds and for for when he doesn't want to eat but keep feeding him by mouth. Go for the consulation and ask all about it.<br />Ger and the Cats in the BronxBronx Cataldo'shttps://www.blogger.com/profile/00690890704919059565noreply@blogger.com