minti, powered by parents Powered by Parents
First Visit?     Register     Login
 
mom2jedd

United States United States



Give me a gift!
Give me a compliment!

Blog Calendar
« September 2008 »
S M T W T F S
1 2 3 4 5 6
7 8 9 10 11 12 13
14 15 16 17 18 19 20
21 22 23 24 25 26 27
28 29 30
 
  Children  
 
Jedd, male
1 year old
 
 
 
  On Minti Since:
April 2007
 
 
  Last Online:
Today 12:10pm
 
 
  Rank: 176th  
  Profile Views: 1037  
  Advice: 5  
  Votes Received: 63  
  Groups: 8  
  see all  
 


Report MemberReport Member

Talking Member » mom2jedd

Compliments

good catch
x1
happy family
x5
minti maniac
x1
mother teresa
x1
super mum
x7
wise owl
x3

My Recent Gifts

Me and My Family

[see all me and my family]
Home-after heart surgery
Home-after heart surgery

My name is Jessica and I am 30, officially out of my 20's. My hubby's name is Jedd and he is 33. We have been married for 9 years. After 2 miscarriages and 6 years we have our hands full with "Little" Jedd. (See my advice for congential heart defects for the hand full part). Other than the defect and the feeding tube he is a happy go luckly little guy for all he goes thru. We live in the USA.

Jedd has some medical issues of which we ar trying to get resolved. He had very severe reflux and for a long time it was out of control. Because of this, he refused to eat any longer and is now prodominetly tube fed. He has recently started to take some formula orally which is a true miracle....we are overjoyed. He can't do any solids, even baby food, it will cause him to gag and vomit. He is not used to the texture and doesn't know what to do with it...LOL

Update (Aug 08) Jedd is now completely oral. He eats stage 2 baby foods as well as liquids only. This is no ttypical of a 21 month old but for his past track record it is amazing. He is on a very strict eating schedule so he can maintain his current weight and gain slowly. We are jsut glad to be out of the failure to thrive department for once in our lives!!!! Fro the first tmiie we are only using  his feeding tube for medications. Hopefully in the future he will take them orally. But right now he won't.

Jedd looks amazingly healthy for all themedical struggles he has gone through. To look at him form the outside you would never know that his chest is covered in surgical scars. At ...

see all


Advice

[see all advice]
Traveling With a Medically Needy Child/PersonMarch 5th (Highly recommend) (Highly recommend) (Highly recommend) (Highly recommend) (Highly recommend)
Tips to Help Ease RefluxDecember 2007 (Highly recommend) (Highly recommend) (Highly recommend) (Highly recommend) (Highly recommend)
Severe Reflux In Children (& some tube feeding info.)December 2007 (Highly recommend) (Highly recommend) (Highly recommend) (Highly recommend) (Highly recommend)
How to help your Kindergardener (or any age school child)June 2007 (Highly recommend) (Highly recommend) (Highly recommend) (Highly recommend) (Highly recommend)
Our life with a congenitial heart defectJune 2007 (Highly recommend) (Highly recommend) (Highly recommend) (Highly recommend) (Highly recommend)

Friends

Kellzacar
Kellzacar

Arna
Arna

dannii17
dannii17

llmunchkin
llmunchkin

Izzy
Izzy

lexiw
lexiw

electrifying02
electrif
ying02


HarrisonsMommy
Harrison
sMommy



Blog

02
Sep

New Plan!!!!

Comment Published at 10:2110:212 comments2 comments10 Visits10 VisitsReport

Saw this GI this A.M. Oh and why do they have to run soo far behind..really come on.....okay whine out of the way.

(BTW my appt was at 9:00 and saw the Dr at 10:30 and I didn't leave until 11:00), so I have a right to complain. LOL)

We are going to do Axid in the a.m. at 2.5ml and the Prilosec in the p.m. at 5ml. I am allowed to give Mylanta in between anytime I feel Jedd needs it....WHEW!!!!!!

Poor boy, he was just here beside me after lunch and was burping and swallowing and next t hing you know he spit up... It wasn't much but I know it's not comfortable because it was running out of his nose and everything. Just dripping brown stuff (chocolate milk) from his nostrils.

I cleaned him off a bit, wasn't too bad a of a spit up and hugged him and told him "Tomorrow will be better I promise."

Oh and the price tag on that Axid....OMGOSH!!!!

It's almost 50 bucks a month. There is NO generic and we really did NOT think he would take Zantac orally, it's nasty stuff.

So that means we now have per month out of pocket...co-pays..
Prilosec...$50.
Axid........$50.
EES........$8.
Claritan (OTC) $8.

When does it end!!!! Really.....

We are to do this for about 4 weeks and then try to wean down the EES. and see how that goes. *sigh*
 

BTW EES is short for Erythromycin. He takes it for his motitliy, to make  his belly empty fast. And yes it's an ABX but it increases stomach motiitly in low doses.


All in all it was a really good dr appt. though.

31
Aug

Poor Jedd

Comment Published at 20:2020:205 comments5 comments14 Visits14 VisitsReport

He has gotten to where he just absolutely LOVES goign inot he nursery for SS and church services.

After choir practice I like to go and check on him and let him go his my parents and take him back in before I go to the choir loft.

Well he is coming out and the worker closed the door and Jedd starts SCREAMING his head off. Well I assume he got his finger in the door.

I rush him out and sit down and try to calm him down. When I fianlly look down at him he is bleeding pretty badly !!!!!!

I get a look at his finger and he is cut pretty bad....and is really bleeding. He has a big chunk missing from the side of the finger.

So I rush down with him to get some ice for the finger and head back to the infant nursery because all he supplies are there.

He wanted NOTHING to do with the ice so we turned the sink on and he calmed down and played in the cold water. Hey, it was the best we could do....LOL

Come ot find out it was not the door but the fact that the door jam on the latch side had about 3 nails sticking out of it!!!!!

Sure enough there was a smear of "Jedd blood' right next to one of the nails!!!! So then off I go to call the after hours nurse line at our Dr office to see if I need to bring him in for a tentnus shot.

They call me and back say as long as Jedd has gotten him 2,4,6 12 and 18 month shots he is good. (I think those were the months I wasn't exactly thinkin' straight.)

I tell her he gets his shots on a spread out schedule. So she pulls his chart up on the hospital computer program and checks. I LOVE that about our Dr and hospital!!!!!

Sure enough he was okay he was fine on his tetnus and didn't need to come in to get another shot!! YAY YAY YAY

Oh and on the way back into the nursery to play while we waited for Daddy to get out of the choir loft so that we could go home and get some tylenol, Jedd scrapped the top of his foot on the door as it swung open.

To make it worse I had taken his shoes and socks off to cuddle with him while he was screaming!!!!

So now the top of his big toe is sore!!!!

Oh, and a cookie made this all better. Is that a GREAT sign or what!!!!!!!!

Poor boy!!!! He got extra hugs tonight!!!!

26
Aug

He Lost A tiny Tiny Bit....:(

Comment Published at 15:4615:462 comments2 comments12 Visits12 VisitsReport

So tow blogs in one day....this is not the best.....:(

On June 26th Jedd weighed 12.2 kilos. Today he weighed 11.9 kilos. So it really was a tiny tiny bit he lost. This is also taking into account that I tried to stop his Claritan and it did not go well for about 2 weeks of that time.

He did grow about 2.5 inches. WHOOHOO!!!!It's about time he got taller!!!!!

We are to keep doing what we are doing and offer textured solids 3 times per day instead of two. She also wants us to offer something hard and chewy to chew on before each meal so he can practice chewing and gain muscle strength, like twizzlers or beef jerky.

So long appt but not really much change.

She was actually pleased with his weight even though he lost the tiny bit because now his height and weght %tiles match for the first time ever. He is right at 25 now!!!! YAY YAY YAY

I am to work on getting meds done orally. So they want the claritan and all his E-mycin done orally and they want his milti-vitamen crushed and put in food or drank orally with water.

We are not sure what to do about his Prilosec because he needs to be empty for that and I give it to him in his sleep around 10:30 every night....so we are not sure about that one. Being that he pretty much has food IN his belly ALL day and is NEVER empty, we are at a lose.

A scary thought is the fact that if Jedd takes all his meds orally and maintains his weight for 3 months they want to yank the tube!!!!!YIKES......

I think she saw the look of shear panic on my face because she quickly added unless you want to keep it just in case!!!! YES YES!!!!! I was thinking but I did NOT scream it...LOL

I told her YES it will stay I would hate to have to need it in the future due to a regressions and then NOT have it....LOL

So fo rnow and at least a year if I have anything to say about it that tube is going NO WHERE.......

Thanks for reading my update about Jedd!!!!!!

and

26
Aug

Sad Realization Today :(

Comment Published at 05:4905:495 comments5 comments19 Visits19 VisitsReport

Jedd has been trying to potty train so today I have been taking him ever hour at the top of the hour just to get him in the habit and he has been peeing everytime!!!!

BUT.....

I noticed at the last 3 times he has drips coming from the underside of his "boy part".....

For Jedd this is really bad news....it means that for sure his hypospadias repair has failed and he will need to go back to he OR for it to be re-done.....

I have talked with the rehab. clinic this A.M. and she said just go with whatever date the urologist wants to do the repair and we will just grin and bear it with the feeding issues that each OR trip entails.

I talked with the uroligist nurse and told her what was going on and scheduled an appt for his next post-op which is on Oct 24th. There is no need to see him any earlier becuase there is nothing they can do about this....

They can't do another surgery until at least 6 months post-op and that is not unitl Oct. anyways.

The nurse will write everything up and let the dr. know and if she feels the need to see us earlier they will squeeze us in.

So, in the mean time, we wait....

Archives

September 2008
August 2008
July 2008
June 2008
May 2008
April 2008
March 2008
February 2008
January 2008
September 2007
August 2007
July 2007
June 2007
May 2007
April 2007


Add to Google Add to MY Yahoo! Add to Bloglines Add to Pluck Add to Newsgator

Do you have an external blog? Setup a copy on Minti using RSS?

Tag Cloud

airtravel   delayed   eating   emptying   equiptment   feeding   feeds   heart   heartburn   k-5   kindergardener   medical   presciptions   reflux   school   secruity   teething   thickening   travel   traveling   tube   2   8

Recent Activity

2 days Question Comment Re: Ovulation tests????  
4 days Question Comment Re: Sleeping positions and SIDS  
4 days Question Comment Re: Sleeping positions and SIDS  
4 days Question Comment Re: can u still be pregnant if told you've had a miscarrige??  
4 days Question Comment Re: Constant Blood nose  
6 days Question Comment Re: grrrr blocked ear!  
6 days Question Comment Re: 2 silly questions  
1 week Question Comment Re: nappy rash  
1 week Question Comment Re: a tummy itchy  
2 weeks Question Comment Re: I need some advice