Wednesday, May 13, 2009

A Doctors Office At Home !!


This picture is all the meds I give my family daily 2-3 times a day and there are others not pictured only because we don't take them daily and they are the ones we take when needed.I want you to know it helps me as a mom of a family of 5 with medical issues to share what I am going through !! I have not been that good with sharing my feelings or the extent of medical issues on my blog because at first I thought I don't want people to feel bad or like "poor thing" :) I have read other blogs from friends and I realize its okay to be going through hard things and its okay to share that! I am okay with what the Lord God has Gaven me in fact He never said" Crystal its going to be easy"! If everything was easy how would I be able to glorifie him in my trials? The Lord God has done so much in our family's hearts and we have a peace that comes only from him!that's not to say that as a mom I don't get scared and start forgetting that the very same God that created my family knows what he is doing when one of my children gets a temp of 104.8 or one of my children has a asthma attack and I have to call 911 and the other gets admitted into the hospital because of a asthma attack as well :) This is Gods perfect plan though I may not see the outcome in the end but I do know God knows!!

I really love these verses and they encourage me alot!!

"Do everything without complaining or arguing, so that you may become blameless and pure,
children of God without fault in a crooked and depraved generation in which you shine like stars in the universe..." Philippians 2:14-15

"Give thanks in all circumstances, for this is God's will for you in Christ Jesus."
1 Thessalonians 5:18

" LORD you have assigned me my portion and my cup."
Psalms 16:5

'' I have set the LORD always before me. Because he is at my right hand . I will not be shaken."
Psalms 16:8

'' Therefore do not worry about tomorrow, for tomorrow will worry about itself.Each day has enough trouble of its own."
Matthew 6:34


I took Addison who has had a cold/fever/flu to the doctor on Monday because Addison's Asthma was acting up again and she informed me that she could not breath like last time!The doctor put her on prednisolone and back on breathing treatments every 2-4 hours along with her Qvar inhaler, 2 allergy meds and 2 eczema meds! Dr Garcia also referred Addison to a allergy specialist funny enough it ended up being the same place Lille goes!Just different doctors.My thoughts are I would like to see what doctor I feel is going to be the best for our whole family.
Lillie now started having a fever Monday but it was not to high then yesterday it went up to 102.3 I gave her fever meds and it went down then back up to 102.0 within 1-2 hours!last night we put her to sleep and she woke up at 12am and she had a fever of 104.0 so we gave her more meds and gave her juice and waited for her fever to go back down too 100.00 then called the advice nurse to see what we should do for Lillie!I usually know what to do when its my other two children but when it comes to Lillie I get concerned because she has other medical problems!So the nurse told me to call Lillie's ped in the morning.Lillie woke up around 8am and again we were faced with her fever of 104.0.I and made a apt at 1:45PM during the day I tried to keep the fever down without overdosing my little girl but her fever was not going down!By the time we got to her apt in bentwood her temp had reached 104.8!Dr Garcia took swabs of her mouth and nose for swine flu and for strep!The strep was negative and the flu we will find out on Friday for Addison and Lillie's follow up with Dr.Garcia!One of the good things was that since Lillie has a feeding tube in her tummy is that Dr Garcia said as of now he wont admit her into the hospital because we will be able to put meds that she refuses to take by mouth,her formula(all her nutrients),and Pedialyte,in her feeding bag and run her feeding machine all night!something they would have to do in the hospital to keep children hydrated while being ill.So really this is a true blessing to be home and not in the hospital and if we do end up going we will trust God with his will for our family! Lillie has also lost 1 1/2 pounds in the last month and for those people who do not know it takes Lillie about 3-4 months to gain that kind of weight back!so where Lillie was almost 22lbs she is 20lbs!Dr Garcia put Lillie on a antibiotic for her virse and a med Incas she has the flu along with her EE med and Acid reflux med and eczema med!Lillie just woke up from her nap at 6pm and her fever has came down for now.


I also wanted to share that I have been doing some more research on Lillies diagnoses of Eosinophilic Esophagitis and what caused me to do some more serious looking was for the last 2-3 months Lillie's speech therapist Kelly was asking about Lillie's swallowing !let me inform you that Lillie has had feeding issues since birth! Kelly has been showing great concern because she has been working with Lille twice a week since Lillie was 5 months old.I had remembered reading that children with EE have difficulty swallowing!so I had mentioned that to Kelly,and she told me she wanted to know more about this EE and so I went home to look up some information for her over the last week I believe that God could be revealing that This is Lillie's whole Diagnoses the whole thing from the beginning!Lillie being hospitalized 6 times in the first year of life and why she has not been thriving!I know that EE has only been around for 20 years or so and that doctors are not completely aware of the seriousness of this disease (at least Lillie's doctors right now) So my job as a mom is to be Lillies advocate and start telling the doctors what I know and That there are questions that need to be answered through more invasive testing and biopsies from the GI department at children's hospital in Oakland!I will be asking Lillie's allergist to test for fruits and veggy as well !I have so many things I want to say but honestly my mind is so consumed with our family and all the medical issues we face everyday!I know that Gods grace is sufficient to get me through each day and I have hope knowing and trusting his will for our family is the best and its for our good! Iam asking please that you will keep our family in your prayers as we face challenges as we all do!Its just everyone challenges look different! Please pray that we will find out more on Lillie's EE and that we will get the test done that need to be done to find more out for Lillie girl and that God would lead us to find the perfect doctor that knows how to better treat a child with EE.I thank you for continuing to pray for our family and the comfort to know we have a church family and friends that care helps to get through! I thank God for all he has given to us as a family and we will trust that his will and plan is perfect I have hope in knowing it is true.

PS. I have a U- tube video on EE at the top of my blog your welcome to watch it as it gives a little insight to What Lillie has.



Lillie had Temp of 103.0 and still took the time to check froggy's temp! I thought this was cute!!




This picture is the kids meds before bed time!I wanted to share with you little bit into our daily lives!




This picture was of tonight getting all her meds in her tummy and getting her tube ready to be hooked up for the night.

8 comments:

Brook said...

Poor Lillie. Her cheeks are so red. :( I hope she is feeling better!

Much love! ♥

The Pichura Family said...

Crystal, I sit here typing and crying at the same time. Tears of sadness,yes, at the continual ailments that God has chosen to give you precious kiddos...but, honestly Crystal, they are tears of thanksgiving. I have known you and Tony for many years...and I have seen you grow in the Lord in ways that touch my heart where there are no words to explain. I am so thankful for God's saving grace in yours and Tony's life. A salvation that gives you hope and purpose every single day. A salvation that is seen by more doctors and nurses and specialists than most of the rest of us will ever see in all our lifetimes combined. You lives are a testimony of the glorious truth that "when we are weak His power is made perfect" that " we can do all things through Him who gives us strength" that "nothing can ever seperate us from the love of God." You are a testimony...a lived out picture of the gospel and it's transforming power...and I cry tears of joy to have been given the blessing of knowing you and seeing Christ at work in you in a special way!
I love you, Crystal...keep sharing...as one "Valley of Vision" prayer states...there are stars in the heavens but we only see them shining brightly when it's DARK!!! You shine the glory of God in the midst of dark times! Keep sharing and keep living His grace dear friend!!!!

The Pichura Family said...

Crystal, I called all my kids together and we sat and watched to youtube! I just want you to know that we will ALL be praying for you as a family!!!! I am still determined to put together a prayer book...so, if you have a picture of you guys..send it on up for your page! love you!

crystal said...

Thank you!for your comments!It made me smile and blessed my heart!Thank you for taking the time to pray for our family at this time!!love you!!

Family said...

Crystal, You have brought tears to my eyes and thank you for the video. Like you said God is the author of everything and everything goes through his hand first. Know that we are praying for you!! And Thank you, Thank you a thousand times for sharing your heart with us. We need to hear these things...God uses them over and over to draw others closer to him. To help other to be thankful for where God has them. To plant seeds in others hearts to show others where your strength comes from. All that you shared will remain my mind and thoughts so I can better pray for you!! Thank you for sharing again. I will be praying for wisdom and courage for you to share with the doctors on what test and things you have learned about EE. Lots of Love and hugs from Karen

Angie said...

A friend found your blog randomly and told me I had to read it! My daughter has a Mic-key g-tube also and she was just sick and lost 3-4 months of weight gain as well! aaaahhhh! Fortunately, she's gained most of it back and I'm thinking the reason is b/c we switched to pediasure and I think she is absorbing/digesting different. I dont know but I dont care! Anyway, Ella's problems are different that your daughters, but I just wanted you to know that you are not alone! I'm interested in reading up on EE and knowing a little more about her diagnosis. Stop by and look at my blog. I write about G-tube stuff sometimes too! Much love to you!

For His Glory said...

Just the top pic alone overwhelms me Crystal! But I know that God has given to each what He wills and for the purpose of sanctfying and growing you into more Christ-likeness...Always share you heart, it is a way God uses the trials he's given you to encourage others...Love you

athomemommyof3 said...

WOW! To see the photo of the meds you deal with really, really makes me feel......I can't even say...it breaks my heart and brings tears to my eyes. I think I have so much on my plate and at times feel so overwhelmed....my life is nothing compared to yours! AND, you have such a great attitude...I need to learn from you!