Friends,laughter and health

The kids and I just got back from a week long trip to florida to visit my parents and boy did we have a blast.It was so very relaxing and full of quality time with some of my favorite peopleThe kids were beyond thrilled to see mimi and papa

We spent tim with cousins at the beach..

hung out with mummy

and did everything mimi did

.My cousin & best friend was down a week before I came and our trips overlapped by 3 days-We haven't seen each other for almost 6 months!We got to spend time together as well.You know that girl friend who just really gets you-who makes you laugh from the pit of your belly-who you can make laugh with one tiny odd little comment,who ,when you say 3 words of  a sentence she knows where your going with it or how your feeling about that situation..the one who you have so many memories with that the "inside jokes" just flow when your together,that one who no matter how long it goes since you seen or talked to each other,nothings changed and you pick up right where you left off as though you never missed a beat.The one who your heart breaks when she goes through tough times and all you want to do is pick her up,take her out for the evening and just laugh together cause you know she just needs that.The one who ,you could go to a coffee shop and order her favorite drink without asking what that drink is...that one..thats my Tonya.

We spent the evening together wedneday ,taking our kids for ice cream and talking as fast and as much as we could to fill up the night and when it was over we still had so much to say...Thursday we went out with our moms ,my 2 kids and her oldest,We ate sushi,cause that's our favorite and a tradition we started a few years ago for each others birthdays,instead of gifts we treat each other to sushi.We giggled at our moms being so cool,

we laughed as we asked for the kids style chopped sticks for our kids and then some for ourselves as well,

we sent pictures to our sisters to make them jealous and show them what a great time we were having,we smiled with pure delight as we watched our kids interact with each other cause that's what we always dreamed of,them being best friends like we are.

Then we headed out and went to her moms(my aunts) house to let the kids swim in the pool.We spent the 2 hours there just laughing,laughing at our kids at our moms but mostly at ourselves:)Shes pregnant and having the baby in may so we watched her tummy in hopes that the baby would kick while the kids were watching,i made funny comments and she giggled that laugh that just egged me on to make more funny comments while our moms were taking videos and pictures of us laughing together. Mom and I took the kids home for naps and later went back over to eat supper with them.And have even more fun.It was such a good day...when tryin to tell my husband about it all I could say was just that I was just so happy but I think more then anything,being with her and our moms,and havnig the fun we had,just made me forget all the rest of the stuff that was going on around me...

After I posted my last post about what the surgeon said,i assumed his word was golden.That the scab was nothing to do with the infection. I had to call the Id doctor to ask about Haydens meds,i assumed since he said the scab was not infection that that meant Hayden could come off her meds cause the reason she was still on the meds was because of the scab.Well when I called the Id doctor she said Hayden could come off the one med but she wants her to finish out the other when I asked why she said she doesn't think she agrees with the surgeon about the scab,she thinks the scab is residual therefore she doesn't feel comfortable taking her off the meds completely.While in florida Haydens meds were just about gone so again I assumed since she said finish it out that after this bottle we'd be done.But then I realized I still have like 6 refills on the bottle..so I called in again to ask if she meant finish out the bottle I have or finish out the refills...and she said she wants her to stay on it until she see's her again in april.I keep praying that God will help me just to roll with this..to not let any of it sting.But it just does..everytime they say "a little longer" its like another kick.A few weekends ago we went to myrtle beach for the weekend with Matts ball team and I forgot Haydens meds(a first) so for 3 days she went without and she was a bear..it was as though her body was going through withdraw.I kept thinking im imagining,but after talking to a few people and them saying things like well shes on drugs what do you expect?!
In florida Hayden got sun and for some reason when ever she gets sun(since being on meds) she gets bumps all over her skin.This time it was on her face and neck.So I was researching her meds for the millionth time trying to figure out if its the meds or something else causing it..
I sit here day after day thinking "Ok God give me wisdom,help me not to worry I give this to you.."but like any thing we deal with in life it is a constant giving up..Its reminding yourself,this is not for me to carry,even though as a mom I feel like it is..
Last night we had a church and they talked about going through the fire and you know what? I got excited..cause I feel like we've been walking through a fire, and its been a year now,how much is God going to use this,us?! He has to have something big in mind.OH father bring the fire!! REFINE ME!!One thing this has taught me is I am so far from perfect,there is soo much work to be done on me. As we sang last night
 "Refiners fire,my hearts one desire is to be Holy,set apart for you Lord"  I couldn't say it better myself,Lord I want to be holy!

Nuzzled in...

How do I start todays blog... one word. TRUST. There have been so many times over the past year that I felt I have had a choice..to trust God,the almighty ,omnipotent Father of mine.Or to worry,to stress ,to fear.I must admit that although my soul longed to choose the first option,more then once,my flesh has gone with the ladder. And everytime,im reminded what an awful place that is to be in.Over the past week ive had days of both,we had allot of stress ,with both Matt and I being sick middle of the week last week,we had some worry and fear as I have felt like I cant plan ahead of Tuesday(tomorrow)until I know if we will or will not be having another surgery for Hayden.But today...today I feel nothing but trust. Its so amazing to me how I feel like God works everything out exactly how it should be..how I need it to be,before I even know I need it.I was asked to sing on the worship team sunday,but once I got this cold I was like oh boy...but somehow,i was able to sing yesterday..ive said it before how healing singing is for me..and the songs we sang yesterday spoke straight to my heart.At one point while singing I felt like,it was just me and God right there,having church.Even If no one else had "church" I did...And it was amazing." God I look to you I wont be overwhelmed ..give me wisdom,you know just what to do .."It was such a time of sacrifice for me..i felt like right there I was saying "ok God,its yours.Speak to me,i trust you." beautiful.so beautiful. This morning I woke up,and spent some time reading my bible and praying and during that time the kids were having a hard time getting along. So I did something I don't do often enough,i stood up,placed my hands on each of there heads,and prayed.Knowing that they would probably run away thinking its a game,instead,Asher looked at me,stood up and nuzzled into me,Hayden followed in his footsteps and they both stood there as I prayed,nuzzled into me,and at the end both said "in Jesus name ,Amen" and off they went.God gave me a beautiful picture...He speaks over us,And longs for us to nuzzle into Him as He does.I felt so strongly God was just saying.."Today,I want you to nuzzle into me. As I speak over you" SPEAK LORD JESUS! My heart is full.My mind is clear.And my storm,is calm.
I feel so at peace about whatever happens tomorrow. Surgery or not. Surgery would suck and it would be hard,yet I feel at peace.
Im so thankful,so thankful for everyone who has been praying for us, for family and friends that have encouraged and lifted us up, and im so thankful for a God who I know I can trust and fully rely on.

unexpected news again...

"Before they call I will answer; while they are still speaking I will hear." Isaiah 65:24

That verse was so true for me today...
Hayden had a appointment with infectious disease doctor.Last we saw her was right before Christmas when we were hopeing for her to go off of her meds however there was a scab on the first scar that Dr Lacroix felt a little uneasy about so she said lets keep her on meds and we'll meet again in February and hopefully take her off then.
I left this morning and decided not to get my hopes up,i didn't want to be disappointed again...but we got unexpected news again.
As soon as she saw the scab was still there she looked troubled.She said she doesn't feel any nodes but that scab makes her think theres still infection in there trying to push out.She said she doesn't want to stop her meds yet..then she sat there a bit and didn't say anything..and then got a look on her face that I recognized:(She wants us to go see the  Abrams (the surgeon) again.Shes thinking he might need to go in and do another surgery,one where he can clean out any more infection that's still in there and then at the same time can perform reconstructive surgery on the scar.She set up an appointment for next Tuesday and is going to let him decide what to do from here...however,from our experience,if Dr Lacroix thinks that's what we should do,Dr Abrams usually agrees. After she told me all this she went out of the room to call Dr Abrams and set up an appointment for us,during that time I text matt and our families along with some close friends and told them what she said..for about a minute,i sat there tears welling up in my eyes and feeling so discouraged,but just like that I started feeling like "its ok,Gods got this,He knows what she needs,He knows what I need,He will give me strength,its going to be ok.dont out ahead,focuse on now." Dr Lacroix came back in with my appointment scheduled with Dr Abrams and we talked a bit more,she did say that she didn't like doing another surgery on her with her being so young,but its also been 8 months of therapy since her last surgery and it just might be what we need to do .She thinks that after another surgery we could be done..no more meds and hopefully be rid of this awful disease. After hearing that I thought,you know what,i hate thinking about the stress of another surgery,another hospital visit and putting her through all that again,but if it meant for it to be done and over with,i think id be ok with that..its time for healing..its time to move on from this.
I have felt so lifted today..a few times tears have came thinking about putting her through another surgery,but it seems as though God continues to "refuel" me all day.As though satan keeps throwing things at me but right before he does God comes in ,refuels me,and then I stand strong. My amazing friend text me right as I got into my car to leave today before she knew anything about the visit we had just had and she sent me the devotions she had read that morning..about God knowing me..knowing what I need before I need it.."our Heavenly father knows exactly what we will face today and next week.He is eager for us to experience Him as he provides for us..Maybe I needed today,maybe I needed to be reminded of the strength he places in me in the exact moment I need it .When I think  before something even happens "how in the world would I handle that?How would I cope"..you just don't know..you don't know until your there,in the room hearing something unexpected and Gods grace pours in.Not that it don't hurt,not that you don't have your moments of panick...but God...hears each prayer,reaches down ,and comforts.Right.When.You.Need.It. "He is ready to show His strength through our weakness.Our Heavenly Father knows whats best for us and He is prepared to provide every need,if we will but ask"(phil.4:13)
We are trusting God in this...if this third surgery is what Hayden needs..we will accept it and praise Him still...If God says "enough"..we will be grateful. Pray with us for discernment for Dr Abrams when he sees her next week.And also that this next week would be peaceful for Matt and I...I don't like waiting, but I refuse to be weighed down by this.

Come as you are...

Come out of sadness,From wherever you’ve been
Come broken hearted,Let rescue begin
Come find your mercy,Oh sinner come kneel
Earth has no sorrow,That heaven can’t heal
Earth has no sorrow,That heaven can’t heal

So lay down your burdens,Lay down your shame
All who are broken,Lift up your face
Oh wanderer come home,You’re not too far
So lay down your hurt,Lay down your heart
Come as you are

There’s hope for the hopeless,And all those who’ve strayed
Come sit at the table,Come taste the grace
There’s rest for the weary,Rest that endures
Earth has no sorrow,That heaven can’t cure

So lay down your burdens,Lay down your shame
All who are broken,Lift up your face
Oh wanderer come home,You’re not too far
So lay down your hurt,Lay down your heart
Come as you are Come as you are
Fall in his arms,Come as you are
There’s joy for the morning
Oh sinner be still,Earth has no sorrow That heaven can’t heal
Earth has no sorrow,That heaven can’t heal

I have loved this song for a couple weeks now.. every time it comes on the radio it touches something deep within me and every time I hear it I feel like Jesus puts his hand under my chin and lifts my face to look into His.. Isn't it funny how a song can do that to you.
Today the words meant something new to me..."Come out of sadness,From wherever you’ve been,Come broken hearted,Let rescue begin,Come find your mercy,Oh sinner come kneel...All who are broken, lift up your face...Lay down your heart, come as you are.
Coming as I am isn't always easy for me...I may be somewhat of an over thinker at times.. and lately over thinking has been a downfall..."our journey" seems so long. And the longer it goes the more my over-thinking self thinks "you need to just go on. Dont feel sorry for yourself. They're sick of hearing about your troubles.." My over-thinking self is also going to re-read this post and think, I probably shouldn't have wrote that, that sounds bad. But i'm going to write it.. it's healing for me. It really does something for me to express my feelings in this way...
Hayden is doing well.She's still on her medication..I really don't know when she will go off of it.She has an appointment with her ID doctor the 16th of February and im hopeing and praying that we can take her off of it after that appointment.Im also hopeging and praying that God heals my heart..my big momma heart that feels like it took a beating last year...I have such a soft spot in my heart for my little Hayden..shes so tough, but she didn't really have a choice in that,she had to be strong and brave.Still does.Being a mom is so hard..but I think the hardest part of it is the things we feel for our kids..when I see the look of hurt on my sons face,or when I see the disappointment in my daughters eyes when I tell her I cant play something with her right now...but this far,nothing has hurt worse then her in that hospital bed.I was strong for her,i smiled at her when she woke up in the mornings,and I hugged her so tightly before I sent her to the O.R. I tried all I could to have fun with her while she was hooked up to moniters.To make it look like its not so bad.And when she smiled, with her face all wrapped up in that bandage I thought"oh my word,look at her.That tough little cookie.Shes ganna be fine" ...when I feel those things for my kids,i know you feel them for yours as well...I grip my heart and say "my momma heart"
The past week has been really rough...Wednesday I had to go get my one(I only have on thank the Lord)wisdom tooth pulled..I really wanted to put it off but after having about 3 days of awful pain I decided I don't want to go through that again.Wednesday my sister in law had my kids all day and Matt took off work to stay home with me after the surgery.I slept all day,and around five Matt went and got the kids and brought home supper from wendys:)Thursday I was still on oxycodone which makes me crazy and so tired.I was getting dizzy when id stand up so again ,sis in law to the rescue, Val came and spent the morning at my house taking care of the kids and cleaning up while I layed there dozing in and out.Thursday evening I stopped the oxy but still had/have to take 800 milligram ib profen and ammoxicillen to fight infection .Friday evening Asher threw up and was crying from a stomach ache.I sent Matt out with Hayden and tried to dis-infect the house and snuggled my buddy while he layed around all evening.He threw up again before he went to bed but woke up Saturday feeling fine.I was so worried about Hayden getting it,so we tried to keep her and him from getting to close but saturday was so beautiful so we spent most of the day outside.Saturday night throughout the night I was having really bad stomach pains,which I thought were cramps(which would make sence if you know what I mean) but thought it was weird I was getting cramps since im still on ibuprofen. Sunday morning I woke up and tried to go to make the kids some chocolate milk and I could hardly walk,i stopped in the hallway and yelled for Matt,i spent the rest of the day laying in bed.Id go out to the recliner for a bit but just couldn't get in a position that didn't hurt,so id go back to bed and just lay there.My tooth was also hurting yesterday morning which was also weird to me since im 4 days out from surgery.So i took a hydrocodone,but that didn't help the "cramps" at all.By last evening i was so discouraged..What is going on??!Why are all these things happening to us just back to back to back...i love that i can say "last year" when im referring to Haydens surgerys or Matts surgery,but this weekend all that felt like last week and then boom...were hit with all this mess.I know satan wants me to feel this way and that alone makes me angry at myself for feeling this.I read on a friends blog whose son is fighting cancer "i feel like were not being carried like we once were" i could relate to that,but it also made me fall on my knees right there and cry out to God on their behalf,cause the battle they're fighting is so much worse then ours.It also made me think..satan comes to kill, steal and destroy and boy do i feel the effort hes putting into that. But we need to stand together, fight for one another.And sometimes ,for me,taking the focus off myself and praying for others who are going through the fire, helps me more then praying for myself.
I guess i write all this to say..Will you pray for us? Im ready for this attack to be over.This year long attack,that seems to never end.My husband handles all this better then i do..He goes on..just rolls with it.But im tired.I feel like God has given me strength right when i think i have none left and im so grateful for that.For a savior that i know has a "momma heart" just like mine and is feeling what im going through.He gives me grace,but there are days i forget to ask for help.
Im feeling "ok" today,the pains stab my stomach about every 15 minutes or so  and even more so when i eat or drink ,ive been looking up all kinds of things...cramps,stomach ulcers,kidney stones...not sure what to chalk it up to..But we have wiffle ball tonight and that's something i look forward to every week,so ill go, and ill play as long as i don't feel as bad as i did yesterday.
Ill end this with more lyrics from another favorite and comforting song..
Come to me you tired and heavy laden, come to me with all your weariness.Here with me is where youl find your haven,and i will give you REST.

Proclaiming in the midst of this...

Its about time for another blog:),I don't know why I don't blog more,i love to write..i love trying to type out what im feeling or thinking about..that being said..
Today im thining about...:)
I have allot on my mind today..which seems to be the case many days. sometimes I feel like my mind needs to take a break..and oh how many times ive told my husband"if you spent a day in my head.."But lets face it...any man would be exhausted being inside any womens mind for a day:)
Over the past week or so,Hayden sarted blinking her eyes really tightly and often..i didn't think much of it at first thinking shes just being silly.Yesterday we were sitting in church and she was relaxed laying against me and I noticed she was doing this..When Matt mentioned it again in a concerned way I decided I had better call the doctor the next day just to be safe.. The one medication she is on,can affect the eyes(Hayden has to see a opthamologist while on this med to make sure her eyes are ok )and the doctor has told us if we see any changes in her to let her know...
however I woke up this morning with a awful toothache.i felt it the weekend but it was dull an di figured it  would go away..i know I need to get my wisdom tooth pulled ,but thought I would just wait it out..i guess not no more.
I felt a little panicky this morning..trying to figure out how we would afford me getting my wisdom teeth out after we just found out before Christmas that our health care wouldn't be covering Haydens dr visits or her meds which is of dollars we owe... but then I remembered something....
I sing on the worship team at our church every now and again..definitely a passion of mine..I love it with all my heart and I so enjoy the group I get to sing with.We got together for practice on Thursday night and the worship leader gave me the songs I would be leading on we ran through the one song and I loved singing it...the tune was so beautiful...the words were so powerful
"God I look to you,i wont be overwhelmed,give me vision,to see things like you do.God I look to you ,Your where my help comes from.Give me wisdom,You know just what to do.."
After we sang it my worship leader shared the story of Jen Johnson,the women who wrote this song and how the song came about..
She was driving in her car one morning,after a crazy morning of taking kids here and there,the stresses of work and so on...and she just started singing.."God I look to you,cause im so overwhelmed" she kept singing that when she just felt God lay on her heart.."Stop telling me how your feeling and start proclaiming!!"So she started singing " God I look to you,I WONT BE overwhelmed"
This morning,all morning I felt like I just couldn't get my ducks in a row,do I call the dentist or not,oh yes I need to call Haydens doctor,which should I call first,i don't want the appointments scheduled on the same day...and so on and so on..it don't take much for me ,especially with Haydens health,to get in a bit of a tizzy...but those words kept spewing out of my mouth.."God I look to you,i wont be overwhelmed"and let me just say,i felt the peace of God flooding my mind..And as I kept singing that song...I made the calls..
I have a dentist appointment set up for this evening ,they are going to give me an exam and maybe some xrays and some pain meds to hold me over and then go from there as far as getting the teeth out..As for Hayden,i called the doctor but had to let a message,
im assuming they will want to see her this week Just to make sure its nothing serious.

Oh Jesus,how much you have brought us through over the past year..in March it will be one year since all of this started..February a year ago I had my gullbladder surgery and a month later Hayden got sick...a whole year..thinkin back to when she got sick and we thought it was just  virus..that feels like so long ago.and never did we imagine what it actually was.Im so thankful for the doctors who got to the bottom of it all,who helped her get to where she is today and who continue keeping an eye on her and will continue doing so for the next 6 months or so.Im also so thankful for the grace God gives in the midst of our storms...I already look back at Haydens first surgery and wonder how in the world did we get through that..I know I have learned so much...and im so thankful for the way God "equipts" us for when we walk through tough stuff.

I had hoped going in to this new year that this year would be free of all things health related(as far as doctors etc)..other then finishing up Haydens meds..But 12 days into the year im guessing that's not going to be the case.When Matt had his surgery it felt so heavy to me,so much,too much.But I think now,i have i a new pair of glasses on... I wont be overwhelmed.
What do you need today? Proclaim it.

When it dont go as we planned...

"And we know that all things work together for good to those who love God,to those who are the called according to His purpose."...
That's the verse that comes to me today..
Matts doctor appointment went great this morning (as we expected it would) The doctor said everything looks great and Matt can do all the things he did before surgery..including playing ball(those of you who know my husband know how happy that made him:)) He does have to be careful when he pulls things with his hands above his head,but other then that,he is back to good!That was such good news for us and he was very happy!
Haydens doctor appointment didn't go as well:( The minute I told doctor Lacroix about the spot on her first scar she got a look on her face.. and as soon as she looked at it she said "we need to keep her on the meds" ..I guess in a small way I was kinda prepared for that..she has stressed to me again and again how aggressive this type of infection is and how we cant take her off of it until we are CERTAIN its gone.. She didn't feel anymore lumps,and that was the first time she hasn't,so that was good...but because of what that scab was doing she said she just don't feel comfortable taking her off of it yet...she wants her to be on treatment for another 2 months and then we will go back,do labs again and hopefully then she can come off.Until then im sapose to call her if I see any little bit of change that area.
This wasn't the news we were hopeing for..I was really excited to start the year with ALL of this behind us for the most part...but its ok..id rather have her stay on the meds a little while longer,then have her come off and it flare up again.So I feel at peace about it..not that I didn't shead a tear or two:) Im glad that part of today is over with,i had allot of headaches the past week and I think its just because of thinking about what the doctor would think and say...God is still working on me in that area...to not take this on myself.Im definitely not perfect in that area.
Another thing im having to deal with allot..as we feel it getting closer and closer to the end of all this for Hayden,i find myself worrying about it coming back..tha was something the doctor said is not uncommon at all...a part of me wishes I didn't know that cause I think of that often..but there again I know that's an area God is telling me to lay down and trust Him...I hate that that is so hard for me to do sometimes..But I must.Its what Hes called me to do...
Thank you all for praying for us !! Please keep praying!
Merry Christmas to all!!!

lets get back to normal...

This week has felt more "normal" then it has in a long time. Matt has not been officially cleared to work yet,but he has been working and put in an almost full week this week.Hes being careful:) and isn't over doing it,but tomorrow he goes in to the doctor to hopefully get the official "Ok" and also find out if/how careful he needs to be . I forgot how much I enjoy my days at home with just the kids..not that having him around was terrible...but this week has just been joyful:)

Tomorrow holds allot for us..Matt meets with his doctor and Hayden also meets with the infectious disease doctor , last time we were there she thought hopefully the next time we come we could take her off antibiotics. Im so eager for this.. but also feeling a bit anxious.Im glad she has an appointment tomorrow,the scar from the first surgery started showing a bit of a pussy looking spot, where the drain would have been, about 2 weeks ago,a few nights ago as I was drying her off after her bath,the pussy part came off and now theres a scab there.  I don't think its anything to worry about but I just want to talk to the doctor about it since its the first "change" weve seen on her neck since her last surgery.

                         (the dot on the scar below her ear is where the scab is now.)
 Prayers for that would be so much appreciated..Shes very much herself and talks a mile a minute these days.:)Im not doing so well at remembering her medicine morning and evening,but she does pretty well at bedtime reminding me "I need my mecine" when I forget:)

A couple weeks ago I went through all my pictures and put a file for all of Haydens doctor visit pictures,hospital pictures and wound pictures,and planned to do a scrapbook of it all...but everytime I go to start it I just tear up..the memories are to fresh,to raw and im just not ready to "re-live" all that again..its weird how something like this feels so much like a wound to me, a wound I don't want to think much about.It brings to many tears,to many sad feelings..so for now..those pictures will sit there,and maybe once we get the final "infections gone" news,maybe then I can start the book:)

We are looking soo forward to spending Christmas in florida with my parents,matts parents,my grandma,matts grandpa and my oldest sisters family. This was the first year we weren't able to go have our family Christmas in Pa with my family,which was so so hard,but ok at the same time since I knew we'd be with some of them in florida.

God has been so good to us...this year has just been so tough,tougher then anything weve gone through..But never once were we alone.Not only did we feel His presence in our midst..He also used our families ,friends and even complete strangers to be His hands and feet.And it was so clear to us that even the generous ,kind and thoughtful things others did for us,was actually Him reminding us that He hasn't left our side...We cant say thanks enough to everyone whose walked this journey with us,who kept us on our feet while Matt wasn't working.Weve talked about how much we have learned through all this.What others have done for us so much as to how we can help others as well. "do unto others as you would have them do unto you" brings a whole new meaning to us...to help those in need,to actually DO things and not just offer,and that even things that may seem small,bringing a bag of coffee, spending the day at our house making food and laughing, buying bandaids for surgery scars and so many more,bring a tremendous amount of joy just as much as anything else would.

I will post again, hopefully soon, after the doctor visits tomorrow ,but with Christmas just around the corner our schedule is CRAZY ...so you never know when ill get it done,this post ive been working on for 4 days:) Thanks for reading! And if you think about us tomorrow please pray!

(Just cause it was to precious not to post)