More Nutrition For Lillie Through Her G-Tube !!!

I am not sure if I had mentioned in past posts that Lillie has lost 1 1/2 pounds in the last month since we took her off certain foods and switched her formula.Iam not sure why but Lillie does not drink her new formula like she did when she was on Pregestimil. I have been feeding Lillie anything she can at this point.I let her eat when she wants to due to the fact she is so limited to so little and may be limited to less in about a week when she gets tested for her fruits and veggys!



It takes Lillie 3-4 months to gain what she lost in a month!So as you can see its not good at all for her to lose when it is already hard for her to gain in the first place!Lillie hit 20 pounds in the begining of march and went up to 21 1/2 lbs within 4 months and she is now at 20lbs as of today Lillie is 2 years 8 months and will be 3 in November :)I think she might be getting taller Iam not sure though!As long as she is happy and not in much pain:)Iam happy for her!!

She is still getting pains in her hands and feet and I will be talking to her Dr about what can be done to help her with the cramping.
div>I called her Dr at Children's and She said Lillie needs to be taking in 35-45 oz of formula a day!and Lillie doesn't want to drink that much!I actually thought about it and I asked myself if I was allowing her to be a stinker by not drinking her formula and I thought about it and asked myself "would you want to drink milk all day long and nothing else"NOPE I WOULDN'T!! Lilllie only drinks about 4-6 oz per drink so really that's all I would or could give her by mouth if I wanted her to get all the nutrients she has to get to thrive a day!So she will be getting feedings through her G-tube.Her doctor said to do night feeds but we switched it and I will be giving her as much I can during the day and at nap time then the rest at night!We have a back pack that is especially made for her machine so she can wear it and be getting feedings at the same time.The reason I want to get half during the day is because the machine will beep any time it gets clogged or the tube gets pinched and usually that means getting up 3-4 times a night to make it stop beeping!Lillie usually wakes up every time it goes off and Lord knows she needs all her sleep and so does mama:)The doctor said her formula is her source of all nutrients because the limited foods she is on as of now is not enough for her body to thrive the way it needs to.So we will be adjusting to the new change of being on the feeding tube once again and I don't have any idea how long but something tells be it will be a long time from now because I had seen her being on her feeding tube as soon as her doctor changed her diet!
I thank God for the new unexpected changes because every time he changes things with Lillie he does something new in my heart as well :)his plan is perfect always!!

FIRST NIGHT IN AWHILE ON G-TUBE!!!!

So I thought I would tell you how Lillies first night back on the g-tube last night! When she woke up this morning we heard Lillie at her door!let me remind you Lillie is in a crib due to her being on the tube and us not wanting Lillie to move around and get out with her tube attached to the machine!I guess we couldnt stop that this morning!So when I went in her room not only was she out of her crib she was not hooked up as well YIKES!!!When I went to look at her tube in her belly....IT WAS OUT OF HER TUMMY!!!YIKES!!She pulled it out when she climed out of her crib and it must have pulled it out then :(.So we put a new one in and she did really good while Tony and I put it back in.It was a blessing though that the machine didnt go off one time last night and that is not normal! but her climing out of her crib and pulling her tube out in the process is not normal either lol.God is very funny sometimes in the ways he blesses us!I was able to sleep and being able to rest and then he let the crazyness happen when I woke up lol:)Iam thankful for my rest!So needless to say Lillie got some great intake last night through her tube.

LAKE SHASTA TRIP !!!

We went to Lake Shasta for 4 days on my grandparents houseboat with my Mom and Dad and Wendy and Kawika and there kiddies!We had alot of fun and enjoyed our time away from our normal :) On our trip we saved a baby bird from drowning and we caught a snake that Addison wanted to hold :) but daddy said no !! we seen a deer and all the kids loved that alot! We did lots of swimming and playing games together and just plain relaxed as much as we could with 7 kids running around all with life jackets on at all times !!(except kalani and kawika)We celebrated Fathers day and we made a special hand print shirt for daddy and he was very proud of it. we celebrated Wendy's birthday with strawberry angel food cake!We had alot of fun and look forward to going up to my parents property in 3-4 days!!

HAPPY BIRTHDAY BIG SIS !!!!!

Wendy Happy Birthday!!
Today is my sisters birthday and for those who do not know my sister,she is very loving and kind She loves Jesus and she daily strives to glorify him daily through being a wife to her husband and a mommy.My sister is a great mommy to her 4 children and loves them deeply and takes her job as a mom very seriously because of the gift they are from God! :) Iam very partial of her as you can tell lol!!



Wendy,
I love you and Iam so blessed to call you my sister! Thank you for all you do for me! Thank you for always being there when ever I need you!Thank you for always encouraging me! I admire you and I pray you have a blessed day! I cant wait to go on vacation together and spend time together!I think we will have alot of crazy fun with everyone on one house boat with 7 kids and 8 adults lol!!hee hee!! I love you winnie!

Wendy likes having fun lol She went down after sending her little ones down!!It made me laugh!

"MaMa I Eat"

This post title is a very normal sentence in Lillie's daily vocabulary of sentences and since we have took out all dairy, all nuts, all fish, soy, beef, Lamb , sunflower, wheat, it has token alot out of her choice of foods we give her! we hear "I eat mama" awhole lot more and its almost as though she has become obsessive with foods and asking for food every 20 minutes and when I give her food she wants more then what I gave her! :)
So when we went to her speech therapy this week her therapist Kelly noticed Lille doing the same thing as I was experiencing at home and she asked me about it and I told her what was going on with Lillie since we took the foods out of her daily life!I told her I was not sure what to do for her! Kelly came up with this great idea to make a box and put all her snacks in baggys and put them in the box so she has full accsess to her snacks!So I went home and took her idea and changed it around a bit as you can see in the picture:)I bought 2 99 cent key holders and put stickers on them and Lets just say as long as her hooks have snacks she does great and is very happy and so is mama. Lillie knows that she doesn't have to worry about food being token away from her as long as its hanging on the wall for her.it has really helped her out alot with how she was feeling about her food! please just be praying that her July6th apt goes well and she can still have fruits and veggies!because Lord knows I seriously wont know what to do:( if I have to take those away from her!I know God knows and if it turns out she is allergic I will have to trust in his plan for Lillie and I know it will not be easy as it is not easy right now to take certain foods away from her!Its like as a mom you are suppose to feed your children not take foods away but in this EE life you do the opposite to keep your children healthy and well!Its taking some time to get use to changing my mind frame when it comes to Lillie.

I have a blog friend and her husband and daughter has EE and she has a precious verse on her blog and I wanted to share it.

Jesus said, "This sickness is not unto death, but for the glory of God, that the Son of God may be glorified through it."John 11:4

I so believe this verse is so true!!and its such a great reminder of why we face sickness in ways we cant explain.This verse is almost all you need when you question why? WHY?do I have to face being sick or why I have to watch my family face sickness!It is to Glorifie The lord our God in the trial of being sick or being the one watching them be sick:)I LOVE IT!!!

A Day At Daddy's Work !!

Yesterday was Tony's work picnic at his work place!For those who do not know where my husband works~ Tony works at Ball Metal a can plant!where they make the cans we drink soda out of and he is a maintainer on the machines that make the cans!My grandpa (my dads dad) had worked in a can plant for 30 something years and My dad has worked at ball metal for 30 years and counting!My uncle (my dads brother) works at ball as well and Iam not sure how many years he has been there!So now my brother in law Kawika has been at Ball for 10 years and Tony has been there for 5 years!In this small town we live in Kawika has 2 cousins who are brothers who work at ball to lol !!!

At work the guys all have nicknames for each other Tony's nickname is "corn dog" he got this name due to the fact he use to eat corn dogs all the time at work!We had to cut those out of his lunch due to his Ulcerative colitis!Kawika is "pineapple"I think he got this name because he is Hawaiian.

Daddy's tool box

They work with some people who are very kind and thoughtful and then there are people that keep us praying for our husbands at work!I will never forget the Christmas before this last Christmas tony and I had been in and out of the hospital with Lillie and Tony's crew gave him a card and all signed it with words of encouragement and $1,200.00 dollars that they had all put into the card!What a true blessing it was to our hearts (we were both crying when we opened the card:)They told my husband that it was for our family to spend on something fun not bills or gas to doctors,or prescriptions but that it was for us to have a good time together!God is so good and God could not have blessed us more!Those kind things leave a impression on your heart for ever!Besides that the people on his crew are always asking how we are doing and Its a blessing to my heart to know that they care about our family!Iam also thankful to God for the job my husband has and Iam thankful to my husband for all the hard work he does each day so that he can provide for his family!He takes good care of us and Iam thankful for what he does because God knows I could not do what he does and be on my feet for 12 hours a day and be in a plant that is always 15 to 20 degrees hoter inside theen it is outside(especially summer time) .

So back to the picnic lol ~They had a rock climbing wall for the kids a jumpy slide,ice cream truck,clowns and games!The kids had a blast and so did I :)We also got to go on the floor where tony works and the kids got to go as well except Lillie she was to little!We had to wear ear plugs and safety glasses!

Addison and auntie Wendy walking through the plant!

We were in the wear house and Those are all cans behind us! crazy ha?

Lillie and Nana going down the slide!

On our way home after a fun day with Daddy at work!!

A little info on appointments for the girls!!!

We finally have appointments set up for Addison and Lillie! If you remembered me saying due to Addison having issues with asthma,well her ped said it would be a good idea for her to see a allergist to get tested for all foods to see if food could be contributing to her severe eczema and the asthma as well.So she has a consultation appt for the doctor to meet with her and discuss what has been going on with her body!Then the next appt will be for her to get the food pick test where they prick her back with various foods to see if her skin reacts!then they will take blood as well to see if it shows up in the blood work if we find her to be allergic to any foods we will be removing them or giving them in moderation what ever the doctor says is best for Addioson!The first appt for Addison is July 1st @8am.

Lillie is getting her food allergy test on July 6 @4pm!This test will show if she is allergic to fruits,veggies,and spices!If we find anything that she is allergic to we will be taking those out of her diet as well as the others we have taken out of her diet!due to the fact that it will cause her to get worse with the Eosinophilic esophagitis symptoms and will cause her to not heal!This autoimmune disease is not curable but is treatable!So we want to do our best in helping to subside the symptoms the best we can as parents!I don't like that she cant eat what wee as a family eat and Iam slowly learning how to make things for her seem not as bad as it seems for me as I feel as though she cant eat alot!I accept her illness as this is what God has chosen for Lillie and us as a family!Iam learning so much more as God reveals to me more and more each day!Lillie has develpoed cramping in her feet during the day and says "owie mommy"!I must say she has done this before we found out her main diagnoses but I never knew what was going on with her besides the fact her body was sick and I had to kinda just figure it out!I never did know why she was saying that her feet hurt until I read it was one of the symptoms that goes with EE along with fatigue and body aces throughout the body!So I was so thankful to God for showing me all the things that have allowed Tony and I to care for our little Girl!
Lillie also has a appt on July 10 @10am at Childrens Hospital in Oakland to get put under anesthesia for her esaphagus and stomach to be scoped with a camera and biopsied to see how everything looks and to count her eosinophils!Basically the eosinophils tells us how bad or good she is doing since they are what is causing her problems!Since Lillie was not being treated for the EE before 2 weeks ago(she has had no treatment since she was diagnosed when she was 1 1/2 yrs.)! As I explained in my other blog post!
I pray and hope all goes well during the first week or so in July as we will be busy with taking care of these little girls of ours that God in trusted to us!We trust in his perfect plan for our family and rest in knowing this.

KIDS AND LEMONS:)

We have a lemon tree in our back yard and the kids wanted to eat them... not knowing they were so sour and I was laughing!I gave them lemons with sugar to dip them in and they ate them but it took a while too eat!!lol I thought the faces were great while eating them!So here they are!!!