PLEASE Pray for my 2 year old son!

[Samuelsmommie]

Originally Posted by kjc

Just a suggestion... my DD has a PEG tube and takes Jevity 1.5 by prescription. I don't see why this formula could not be taken by mouth. It is super nutrient dense... and smells vanilla-y. It is fantastic at getting my DD's weight back up. She gets 4 cans daily maintenance (but I think she's still gaining).

Does Sammie eat puddings? We had DD on special pudding product from a company in Florida, also calorie/protein dense... I'll find their info for you... they also make other products... some drinks that may help...

4WebMed

Magic cups is what we fed DD as a supplement... served in hospitals... they
have a ton of products listed by medical problem...

I will be praying for your DD and family.

I took care of my father while he was dying from cancer and he had a PEG tube also and the Jevity name sounds familiar, I think that is what we had for him. We have several cans left in his room. I will get my DH to go in the room this morning ( it will be two years on Sunday and I still have a hard time going in) and get a few cans so I can check the exp date. I'll also ask his pediatrician what she thinks as well.

Now the pudding hmmmm, we can try again, usually things with smooth textures he will sometimes take, but the last time we tried pudding he acted like he wanted it but the minute it hit his tounge, he pulled back and said " I don't want it" and he did this about 4 times in oh maybe less than5 minutes before he finally licked some off the spoon. But then he walked off and wouldn't take any more.

We know he has some sensory issues and have an OT that comes out once a week with a background in feeding. She is really good with him and after working with him for the last year she has gotten him to eat a half of an egg at one time. That's huge for him. She's also gotten him to accept different textures a little.

Thank you for posting the link, I'm on my way right now to check it out. We are always buying and trying new things to see if he will eat it. Whatever he wants in the store we buy it, even though we know he likely won't eat it. We are roughly paying about $300-500 a month in just pedia sure.

He also doesn't sleep well.... Anyone have any suggestions on helping him to sleep? He's up now. He's gotten up roughly about every 2-3 hours since birth. He's never slept the night through.

[jadabug]

Originally Posted by Samuelsmommie

Found it!

Tracy what a precious picture of Samuel..God has a plan for this baby boy Praying for Sammie and your family.

[barkleylove]

Samuel sounds like a very special little boy and cute as a button.

[southernbelle04]

Praying for you and your family!

[concretegurl]

I have no advice other than I completely understand wanting to postpone tubal feeding for as long as possible.

A friends sister after a long resistance to being able to fed had one put in wgen she failed to thrive, after a fewlong years another put in replaced. I don't know the details but her mother said its both a blessing in keeping her alive and the bain of her medical issues.

I truly have your son in my thoughts sending positivity your way (he is absolutely adorable!).

Hope the neurologist can provide a positive solution to all you've been dealing with.

I swear by the heart beat stuffies and my youngest 18 months old, has severe GER ge has slept on a wedge keeping him elevated since 2 weeks old and requires a special diet and to be upright.

It has helped emensely.

My 8 year old also had reflux he has a medical bed that keeps his head elevated

[Samuelsmommie]

Originally Posted by jadabug

Tracy what a precious picture of Samuel..God has a plan for this baby boy Praying for Sammie and your family.

I've been saying that same thing. Thank you for your prayers

Originally Posted by barkleylove

Samuel sounds like a very special little boy and cute as a button.

Yeah I think he pretty special . Trouble is HE knows he's cute as a button lol. Thank you.

Originally Posted by southernbelle04

Praying for you and your family!

Thank you Amyee!

[Samuelsmommie]

Originally Posted by concretegurl

I have no advice other than I completely understand wanting to postpone tubal feeding for as long as possible.

A friends sister after a long resistance to being able to fed had one put in wgen she failed to thrive, after a fewlong years another put in replaced. I don't know the details but her mother said its both a blessing in keeping her alive and the bain of her medical issues.

I truly have your son in my thoughts sending positivity your way (he is absolutely adorable!).

Hope the neurologist can provide a positive solution to all you've been dealing with.

I swear by the heart beat stuffies and my youngest 18 months old, has severe
GER ge has slept on a wedge keeping him elevated since 2 weeks old and
requires a special diet and to be upright.
It has helped emensely.

My 8 year old also had reflux he has a medical bed that keeps his head elevated

Yeah his pediatrician leaves the option on the table and I respect her because she always tells me we will only put it in if we have to. We make meals fun, no pre assure on him to eat at all. We offer and if he says no or try to eat and doesn't get much eaten, then we give pedia sure. The doctors said they don't care what it is if he asks for it give it to him, so that's what we do.

Your poor babies I will be praying for them also..

It was awful to hear that his tummy was full of acid and had likely been that way all his life. I hate knowing that he likely felt sick or uncomfortable and had no way of telling us and that even when he started to talk he likely thought feeling that way was normal by that time.

[msyorktown]

Oh Tracy I'm so sorry...how did I miss this? Just now seeing this thread.
I know your heart is just breaking...I'm a mom too I know all too well how you feel.
I have no advice to offer, however know that Samuel and your family are in my prayers, my friend. God truly does have a plan for Samuel, He works in mysterious ways. Stay strong and keep the faith....we are all pulling for you and Samuel and of course the rest of the family....should you ever need an ear or a shoulder to vent or cry on...I'm here...please, please don't hesitate to give a shout. Wish I were closer, but for now here is a cyber ((((HUGGZZ)))). Prayers and positive vibes are being sent your way....please don't forget to take care of yourself as well...try and get some rest.
Jacqui

[tjdmom]

I'm so sorry...this must be so scary for your whole family. Sending prayers for you all....

[Samuelsmommie]

Originally Posted by msyorktown

Oh Tracy I'm so sorry...how did I miss this? Just now seeing this thread.
I know your heart is just breaking...I'm a mom too I know all too well how you feel.
I have no advice to offer, however know that Samuel and your family are in my prayers, my friend. God truly does have a plan for Samuel, He works in mysterious ways. Stay strong and keep the faith....we are all pulling for you and Samuel and of course the rest of the family....should you ever need an ear or a shoulder to vent or cry on...I'm here...please, please don't hesitate to give a shout. Wish I were closer, but for now here is a cyber ((((HUGGZZ)))). Prayers and positive vibes are being sent your way....please don't forget to take care of yourself as well...try and get some rest.
Jacqui

Jacqui, THANK YOU so much. I am sure I will be taking you up on that offer. My mind races so much right now that I can hardly rest. But tonight I will be taking something to help me sleep. I have some health problems myself and as DH told me earlier, the last thing we need is me in the hospital. So as soon as I can get him settled down, it will be lights out for me. He went to sleep at 4AM this morning and the little stinker woke up at 8! oh to have the energy of the young lol... I know I'm rambling sorry its the lack of sleep....

Originally Posted by tjdmom

I'm so sorry...this must be so scary for your whole family. Sending prayers for you all....

Yes it is... Sammy of course has no clue and thats just the way we want it.. We keep things very "Happy"... Thank you so much for your prayers and support...

[kjc]

My DD went through all those swallow tests, OT, PT, etc for years. I was at my wits end most days, as at least 4-5 hours a day were spent feeding her...too much and she would vomit, and not enough, as she had severe weight loss. She has Cerebral Palsy, is wheelchair bound, cannot talk (some communication is possible), cannot feed herself, and is incontinent. Basically like caring for an infant, who can act like a teen at times, lol.

She had lost over a third of her body weight, and had been hospitalized a few times... more swallow studies etc. I was shocked at how rude some of the staff could be... just short of accusing us of starving her. Her doctors mentioned a feeding tube, but for some reason it was not approved until the following year.

During that last year, her meals were blended. I shopped like a maniac for healthy foods that were not low or no fat (specifically yogurt and such to aid digestion) to supplement her meals (same as what we ate... and we couldn't lose weight , lol). Had numerous meetings with nutritionists. I didn't know about probiotics until I joined YT, DUH!

Anyway, long story short... her feeding tube is a blessing, or maybe just the prescription Jevity, IDK. Failure to Thrive...Lol. In one month, she put on 30 pounds! She's had the tube in now almost 3 years. I don't have to worry about her nutrition, spend countless hours shopping to find good things for her to try to eat... feeding her, blah, blah, blah. She's gone from looking like a victim of the Holocaust to borderline obese (JK) but close.

I felt I had to share with you... a feeding tube is not always the beginning of 'the end', as many people seem to see it. For her (and us) it is a new lease on life! Everyone's quality of life has greatly improved bc of it. Just not having the constant worry has been such a relief!

I did feel like a failure for a bit, not being able to feed my DD and have her thrive. But after seeing her improve so rapidly with the feeding tube, I know we pushed for the right decision for her. We tried everything, spent way too much time and energy to see her failing anyway.

I would recommend you do it, do not wait until it is needed. You can still work with teaching your son to eat... he may even improve as he's probably got symptoms of anorexia from not eating enough (not judging here at all... just happens when food is not consumed).

And I forgot to mention, another item recommended for my DD for weight gain is Carnation Instant breakfast (Who knew?)

Also forgive me if I said anything wrong... I do not know your total situation... praying and hoping for the best for both of you!

[yorkietalkjilly]

Oh, my, I just went back, saw your post about Samuel's faith and his picture. What an angel he is - one of those that God decided to just put in a human body & allow to live among us to His glory! He seems to be one of those bigger-than-life people whose lives are lived large and draw others to them. He's utterly adorable and I cannot believe that child is so full of his faith at such a young age. He's already a big miracle just for being. May he find many more miracles waiting for him in this life. I just know everyone he meets will be inspired and have their lives changed for the better in ways we can't know. You have a truly special little man there in Samuel! He's a treasure beyond measure.

[lynzy420]

I'm so sorry, I will pray for your sweet child...you can and will get through this, because of him. I know how difficult this is for you and I do wish we could be right there for you, but pleae know that many of us understand and share your fears, sadness and the helplessness that you feel...we as parents, mothers truly understand...you vent to us anytime...we hear you....I'm so sorry this sux so much...

[sandy simpson]

Just an idea. I wish I could help you and make little Samuel's situation better. I was a teacher of k-1-2 grades for 34years. I know how kids need motivation in some areas. I also taught special ed kids. I found kids really like you to make it a game when you want them to do something. Try making a game to get him to eat. Play hide and seek if he eats______. Play ball if he eats______. Take him to the park and see if he will eat and then get to play on the equipment. Will he eat nutritious shakes? Put that shake in a decorated cup. I used to have to decorate work papers so the kid would do the work. Motivation is what kids need. I hope this helps.

[Perrella]

Just read this....adding my prayers for you and your darling Samuel. Sammy is an amazing child. Hugs and bless you both.