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)

Excitement...

Praise be to the God and Father of our Lord Jesus Christ,the Father of compassion and the God of all comfort,who comforts us in all our troubles so that we can comfort those in any trouble with the comfort we ourselves have received from God.(2 Corinthians 1:3-4)

Its been a while since I posted..maybe it was because I really didn't feel like I had anything good to say..it seems as though over the past month or so,i have felt like ive been drowning.I lost my focuse,I left myself feel defeated.And it was not a good place to be in.Im thankful for a Father who reminds me that no matter how I feel,His love is constant,and always shining on me.I thankful for His faithfulness and for His understanding.I have felt myself coming out of the "slump" over the past week.. Last week my mom was here for a few days.We had Ashers birthday party the night she came(even though his birthday isn't until the 23rd) and the next day we went to Haydens doctor appointment in Greenville with Dr Lacroix.That morning as I was getting dressed I was praying and I felt like I heard God saying "your coming out" I loved the sound of that but I had a hard time really believing it all...Well the appointment felt like confirmation to that..Dr Lacroix was so impressed as she felt like the nodes had gotten allot smaller since the last time.I was excited to hear this but not expecting much more to be said but then she asked about our deductible and when it starts over for the next year,i said January and she replied,"ok well lets leave her on antibiotics another month,come in here dec 15th and we will do blood work again and if everything is clear we will take her off.After that I still want to see you every couple of months just to make sure nothing is growing." I got tears.i literally wanted to squeeze her.

(me mom and Hayden at the doctors office)

(shes a pro at all this.getting weighed)

(time for another check up)

 Haydens scars look better every week...hopefully plastic surgery will not be necessary to fix it up at all.

When she has her hair up,its more noticeable but still able to cover it up pretty well with little strands:)

Mom was here till thrusday that week and we had such a fun and relaxing time together.My mom is just so amazing and our relationship is so very special to me.The time we had together here was so good for me.

(the kids were so sad to see her go and Asher has reminded me every day since then that hes just so sad to be missing mimi)

                                  (Mom made Hayden the most adorable little scarf)
Thursday Matt met with his Dr. and again MORE good news! Dr Kana wants to see Matt again in a month(same day as Haydens appointment:))And he thinks after that Matt can slowly start working again..He did say it will take Matt a month or two before he can work full time and he will have to be slow about doing heavy lifting.
The end is in sight,Lord willing! I find it hard to get my hopes up even so,but im trusting God..His timing is perfect
The holidays definitely have brought allot of cheer around here as well..last weekend I put up my Christmas decorations and something about that just brings sucha  cozy warm feeling(Matt would disagree since its not thanksgiving yet)  But next weekend it what were really excited about..my best friend and her husband gave us money ,over our anniversary in august,to go to a Clemson football game,instead of them buying the tickets they left it up to us which game we wanted to go to...We decided to make it  a weekend getaway and used his parents time share to get a motel and stay fri-sun. The kids are staying with Matts sisters family. I cant even tell you how excited I am about all this.Matt and I have been together 24/7 now for the past 4 months,and its had its share of trying times in our marriage.Along with many many good times as well. When we found out about Matts surgery I asked a few of my closest friends to commit to praying for our marriage over the next couple months while hes off work...especially with the stress of Haydens situation,finances,him being home all the time, the list could go on,i knew this wasn't going to be easy,it wouldn't have been easy if it was just Matts situation.My mother on law challenged me then "protect your marriage" those words have rung in my ears and im so thankful she spoke that to me. I feel like this getaway is just that,time for us to be alone,enjoying each others presence,having fun and forgetting about the rest.i am excited.We are closer then weve ever been, I feel and We have learned a ton about communicating for sure.All a part of Gods plan,i know this is true.

 So,we eagerly await December 15th,praying for continual and complete healing for Hayden and Matt and of course ,praying that 2015,which is rapidly approaching,is our best year yet.:)

Thankfulness...

Its funny how things happen through out the weeks and I think to myself "I need to put that on the blog" and now that I pulled it open to actually blog I have to go back and try to remember those things..
im going to start with the Dr appointment we had with the surgeon 2 weeks ago... I forgot that I wasn't going to be meeting with Dr Abrams but with his PE who was taking his patients while he was on vacation...she's a sweet lady but I always like speaking with
Dr Abrams more since he has been with us since the beginning and I know he knows a lot more about it all...anyways,she checked the scars and said everything looks great and that she thought were out of the woods as far as another surgery..i don't mean to sounds negative in any way,but it didn't mean a whole lot hearing that from her since Dr Lacroix is the one who knows more about the infection side of it all and is the one to make that call... The PE also said she didn't think she could really feel those other lumps Dr Lacroix felt..again..didn't get my hopes up.She did say that theres a good possibility that when Hayden gets sick, colds,flu etc that theres a good chance her nodes will swell up  again.That scared me a little because if you remember,that how all this started...a little cold,a little swelling in which the Dr's thought would all go down...but I have chosen im not going to fear that. But when we went to leave she said the most wonderful news.."this is your last appointment scheduled with us unless Dr lacroix needs her to see us again" and when i left i didn't have to schedule another one.....i could have jumped for joy!!one less dr appointment to deal with!!!
With the weather getting cold and flus etc starting I have been doing extra as far as tryin to keep her from getting sick..i use essential oils on her mostly everyday,i give her a really good pro-biotic (plexus...awesome awsome stuff!) and I also am giving her a pill to help her bowel movements(also plexus) since she seems to be getting stopped up allot.I feel really good about the stuff im giving her and feel its definitely helping.Im also taking the plexus stuff since ive been having allot of troubles with rashes on my skin over the past year...and as of right now,i have no rashes at all!PTL.
2 weeks ago I was having a really really rough week...my sister and I talked allot over that time as she would call me to check up on me..i could tell when she called that she was really asking questions trying to read me on how I was doing..which was...well,not good.I have only felt that way a few times in my life and that's after my babies are born,i have had post partum with both (worse after Hayden was born) and that's how I described it to Karen..i started just feeling so down...so burned out..so weak and just sad..something I do not normally feel!I blogged about this last time.i kept telling my sister she should come spend the weekend with me end of November since Matt decided to join his ball team and go to florida for a tournament.I really wanted him to do this,of course he couldn't play but he could be around the guys,coach and do the scorebook.But I was not excited about staying home alone with the kids,especially not with how I was feeling.Well after about a week of me just feeling so down,my sister called and said to find plane tickets to come up for 10 days and they would pay for the trip...I wasn't really into traveling again since we have been gone allot since Matts surgery but after thinking about it a bit I decided I would drive instead(flying stresses me with my 2 kids) so 4 days later the kids and I packed up and headed to Pa to stay with my sisters family.We had SUCH a good time!! My sister and her husband spoiled us.And I even go to work a day while I was there.I didn't know how much I needed that time...to be with my sisters and brothers,to be away from my husband a little,i know that sounds bad,but being together 24/7 for the past 2 months has had its challenges.We came home yesterday after being there for 10 days and I have not felt this refreshed in a while.
Today in church we sang a song ...and it hit me in a new way "oh im running to your arms,im running to your arms,the riches of you love will always be enough.." this past year I have felt things that ive never felt before...almost as though "someone" was tryin to rob me of my joy..and there have been days I feel im loosing in that battle..there have been days I just feel so incredibly week...week as in,im going to loose it..litereally im going to fall apart.there have been days I have felt anger for no reason except that im just so tired...tired of battleing...and even though God has reminded me again and again... this is just a test..God WILL be glorified ,and again and again I am reminded of Job(although my situation is nothing compared to Job)...  there are days I just feel so ungrateful..ungratefull that all this is happening,ungrateful that I have had to watch my 1 year old daughter spend more time in a hospital then I ever have.ungratefull that my normally hard working husband can not work at all right now..ungratefully that these two things had to happen over the same time...ungrateful that my happy little life that I was just living a year ago is now turned around and ungratefull that somedays I don't even recognize who I am because I am not an ungrateful kind of person....but then when we sang these words..."the riches of Your love,will ALWAYS be enough" i can't be ungratefull...Thank you Jesus that you love me...that none of this changes that fact...thank you that my little girl is getting better..thank you that this will come to an end.thank you that today as we ate out with family,someone handed my not working husband money to pay for our lunch.thank you that weve been able to take trips that have all been completely paid for !thank you that we got so much free food to put in the freezer while in pa..thank you that there is medicine to help my daughter get better,thank you that we have not had to stress about our finances.
Thankfullness always trumphs un-thankfulness.Isnt God GOOD??!!!!


I cant believe its November already!! Weve been so busy and that has been such a blessing...weve got to go to pa twice,florida once and church camping and all of those were paid for by family or friends that just decided to.THAT has been awesome.. we had our anniversary in august and didn't really get to celebrate but a very special couple gave us tickets to go to a Clemson football game end of this month,Matts parents have time share and with that we were able to get a motel and now have planned to spend the weekend there.to say we are excited is an understatement..we have not gone away for overnight without the kids since ..well im really not sure...im thinking it was when Asher was a baby.:/I think that will be soo good for us and yes...im just really excited:) My mom has decided to come see us next weekend..that was just planned as well and is giving me something to look forward to over the next week..Ashers birthday is the 23rd of this month so i think we'll try to have his party while shes here.November will be yet another busy month for us and were all ok with that:)
Hayden has a dr appointment tomorrow with Dr lacroix,although im going to try to change that in the morning to next week while moms here so we can spend the day in Greenville and since i just go home and have so much to do tomorrow. I once again and am excited to meet with Dr Lacroix,see whats changed,if anything,and see how long shes thinking for Haydens meds yet.i always have allot of questions and she always is so willing to give answers.
I challenged my sunday school class this morning to this...Put a piece of paper by your bed,and for the month of November,everyday write one thing your thankful for..has to be  something different every day.Im excited to join them in this! Whose with me?!:)

Emotions,Rollercoasters, and Trusting

I have felt soooo emotional over the past week...Womens conference was soo very good!!on Friday evening they had a time of sharing,it went against every thing in my body to share but I felt God was just urging me to..after battleing it for a while I finally picked up the mic. and shared a bit of my story and how I have been feeling...  my last sentence was "I know this Is all a part of the journey God has us on but I cant help  but just wish it ..."and I couldn't say any more...now this is the part where God just leads his children.The lady in charge immediately "I think we need some ladies to surround her and lets just pray" and that's what they did..and oh what a precious,healing time it was...during that time the same lady who lead all this looked at me and said(something like this) "I feel like its time for you to grieve..God is pleased with you!But its ok to grieve,cause this is a loss,its a loss of health.Its ok for you to be angry about this,to be sad...just be real with God."
I have struggled with this..so bad.My view on all this has been "it could be worse."and anytime that I have felt sad about this I remind myself of that and make myself snap  out of it.But when she told me that...it was almost like all my walls came crashing down,like everything around me disappeared and all I could see was our situation and God...Everyone has there own journey,this is ours.
Let me be honest with you ....
let me be raw....
This.is.hard.
This year,has been so hard.and even though the surgerys are over(although Haydens not out of the woods yet on another surgery)to me,it feels like we are right in the middle of it all...
After this weekend,i have been sooo emotional.Sunday i just cried...Monday I just felt so down.and even thought at one point "this feels like how i feel when I have post-partum depression..what is wrong with me??!!"had a headache from Friday night to Monday night.And on and off after that.finally last evening I went and got a massage...The lady  I go to is ..well incredible!a women of faith..and I think God set all this up...Mom in law couldn't make it to her massage appointment ,so she gave it to me...and even though I felt like I probably shouldn't spend money on a massage I decided to "just do it"...The masseuse and I just talked...started out talking about essential oils and how they were used I the bible times..talked about our heavenly dreams and then she asked me about my family...she knew bits and pieces of it all...but as I was telling her this and how I feel my headache is tension related cause its all in my shoulders/neck area, I said" I don't know how to not stress...I try to give it to God everyday but the things that go through my head seem so legit for me to think about..things like  did I give Hayden her meds today? I wonder if I could skip a couple days and try to let her immune system build up?is she acting like this from her meds?Is that a bump on her neck again or is that jus scar tissue? Whens my next dr appointment,cause they will be able to tell?does she have diaper rash again?stupid meds!:/ ..and the list goes on...do I just not think about that stuff??How does a mother not think about that stuff??  
Just talking about this stuff was good for me..getting it off my chest.Even though she didn't really have the answers.. anyways after my wonderfullllllll hour long massage and even having me move around to make sure the knots were gone,I went to pay...normally I pay 45 for an hour...she only charged me 25...Pretty cool right??:)
This morning I decided I wanted to blog..about my weekend my week...and how emotional and rough its been and it dawned on me...maybe ive been feeling the way I have because im grieving...maybe this is just that..
But just as I was feeling a bit "alone" Someone handed me a envelope last night,from some friends from pa,a giftcard to our favorite restaurant in town...and then someone else gave a beautiful bag along with a check...and it was just the "boost" I needed.
God has just been asking me to be real with Him...and its hard for me to be real and yet still feel like im trusting him..you know?like does it make sence to say "God this is so hard,this really sucks.im tired of this.but I trust you..you know best." I think that's something God is teaching me...the middle ground in that.Ill let you know how that turns out:)
Hayden meets with the surgeon on Tuesday.She hasn't seen him for 6 weeks..im a little nervous to be honest,after what the ID doctor felt when we were there 2 weeks ago...but at the same time im excited.To see what he has to say...hes usually really honest with me and I appreciate that so much.
Someone asked me over the weekend how Hayden is...honestly,if you didn't know wht was going on,youd think she wasa normal healthy kid..if your my friend on facebook and see the videos I post of her..shes a real hoot...but like any kid she has her days..there again I think "bad day cause of meds and infection or just normal bad toddler day?":)She has been complaining of her neck hurting lately again..not sure what that's about...
As for Asher...he turns 4 next month...Hes a growing boy!!I have to remind myself when he has his outbreaks..that he too has been through allot the past couple months..Hayden gets allot of attention just cause were very aware of her infection etc...im learning though that Ashers love language I think is quality time..well that and physical touch.so weve been trying to do more with just him..although right now that just looks like...sitting on the chair holding him ,reading to just him etc..Im so proud of him though..he and hayden don't always get along but he is protective of her and when shes not feeling well,hes right there to help take care of her.
Matt had a doctor appointment end of last week and is now out of his sling(I cant remember if I wrote about this or not??!) after a long 9 weeks of being in it...however the doctor said he is not allowed to lift ANYTHING except a cell phone:)He also said he wont release Matt to work before December..even then its not for sure...
Ill end with this.. a verse someone shared with me at conference and its my verses from till till all this is over...
Isaiah 43 :18-19
Forget the former things,do not dwell on the past.See I am doing a new thing.Now it springs up,do you not perceive it?I am making a way in the dessert and and streams in the wasteland.
When think about that...this is all a part of God making streams in the wasteland...its just so encouraging to me...
something that's been on my mind allot this week..my friends who have been sticking by me...my family and husband especially....and you who continue reading my blog and praying for us...you are so treasured!thank you !

Singing lips...

Everyday I wake up I think..todays a new day..
Jesus,today i thank you for fresh starts,for crisp mornings,for the energy I felt to crawl out of bed this morning.For my sister in law who drove in this morning and is staying with me for the weekend,for the tiny bit of peace and quite I am having right now as she took my kids out for a bit.Lord You just know...exactly what I need,exactly when I need it.That gives me every reason to trust you...You are all-knowing.Thank you.

I cannot even say how busy I have been...I feel like im in constant go mode!We had church camping 2 weeks ago(was that already 2 weeks??!!)What a good time we had,being with our church people,and just being in the outdoors.We all had such a great time.We came home from that and 2 days later Hayden had 2 dr appointments in Greenville.Her first appointment was with her new eye doctor she has to see because of the med shes on and the side effect it can have.We were soo happy to hear that not only are her eyes fine,but we don't have to go back again until February!(we were expecting to have to go monthly or even weekly.)After that we went to we infectious disease doctor. She was hapy to hear that Hayden is doing really well on her new med.Hayden seems to like dr Lacroix a little more everytime we go in and this time she was more then willing to let her feel around her neck area. Dr Lacoix said she thinks the nodes are melting but she still feels infected nodes in there, one is right behind her first surgery scar and then behind her 2nd scar she felt a clump of them(she said it feels like shes rolling her fingers over some grapes)the clump is the one we will watch. She didn't want to see her again until November(ptl for us!) but wants us to keep a close eye on it and if we see any change to bring her in right away. The part of not having to come back for a while was good news...the part about her still feeling them..not so much.That just means ,they are still there and from my understanding also means that were still looking at another at least 10 months on treatment. Oh how I HATE to think about that,and what all this treatment is doing to her tiny little body...We have an appointment with the surgeon again in a week and a half..and im curious to see what he thinks about the ones that are still there.
I didn't have much time to think about all the dr stuff  until writting this out since directly after that appointment we headed to florida. And just writing about it makes me tear up. Lord how I love to see you working but I cant help but think im so ready for this to be over.
We had such a good time with my parents,who just moved to the sunny state:) There is soo much to do at my parents house down there and the kids had sooo much fun.We spent most of our waking hours outside riding bikes around the little town they live in,theres little to no traffic going through there so we rode the streets freely(if you've ever been to pinecraft you know what a special place it is) They played in mimis sandbox and little pool,we went to the beach twice,spent time with my grandma and just had a blast really.Saturday a good friend of ours (more like my little brother ) got married down there and I was co-ordinating the wedding, and my kids were both In it as mini bride and groom.So leading up to Saturday I was busy.Sat night I was exhausted and sunday I just relaxed.we decided to leave one day early since our church is having a womens conference this weekend and I have part and had practice Tuesday night .So we headed home Monday lunch time.Tuesday I spent the day cleaning up my house,unpacking,doing some laundrey etc. Tuesday night I had practice and didn't get home till late.Wednesday I had coffee with an old friend from pa..and what a good time it was.We laughed,we cried and we prayed together,She left my house and I felt so uplifted and encouraged. The things she prayed over me I felt God was answering already that afternoon. Jesus knows when we cant pray ourselves for the things we need..he sends our friends to pray it for us.What a mighty God we serve!!!! I did my grocery shopping yesterday afternoon and last night had practice again,that leads us to today...Did I mention ive been really busy?!:)
Matt went to the dr this morning and got his sling off FINALLY!!!"Oh happy day!"(happy day is Haydens favorite song an she walks around singing it all the time..go listen to it,and be happy:))
Tonight the womens conference starts..i am really excited about this..i have been feeling that God is going to do some incredible things in my life and the lives of these women this weekend and I am just so excited to see it unfold and to feel his presence and glory flowing throughout all of polk county.It wont be contained!
If you are one of our faithful prayer warriors,i just want to say thank you,and please don't stop... Matt not being at work has been challenging, We are learning so much about each other right now..being together literally 24/7..you kinda do . We still have so much to learn . Its hard not to forget each other..to remember that that face your seeing all the time is the face you love and can fall into...Its been especially hard for me ...with him being here all the time and not being able to do allot...I tend to carry everything on my own,and that's wearing,and tiring,and not how its saposed to be. Gods working on me there:)
I must go, the days not going to wait on me.:)
Please pray for me ,my family and all the women of FCC this weekend as we do this conference... Matt will be taking care of the kids,making suppers etc...he will need extra patience:) for my kids,that they don't give there daddy a hard time:) and for me,that I can enter in to His presence with joy,that Gods love and peace would radiate through me,both at conference and when I enter my home and that God would speak this weekend. That He would do amazing things.That his presence would be almost tangible....
Im singing on the worship team this weekend..for anyone that knows me knows how I love to sing... I just opened my bible to psalm 63 and read :"With singing lips,my mouth will praise you" beside it I wrote "singing lips best express a satisfied soul"
"Because your love is better then life,my lips will glorify You"Psalm 63:3
Now,go sing!:)

somewhere in the midst of this storm...

Its been far to long since I updated my blog!so bare with me if this post is another one of those lengthy ones:)
Last week was a very rough week for me.When Hayden starts showing side effects of the meds shes on, I get stressed. And that's what happened ...i didn't want to call the doctor right away cause i wanted to see if we could make it..well after about a week straight of her being so tired,looking so sick,and being a total and complete grump,i called the doctor,they switched her to ethambutol. Being on this antibiotic means that Hayden will have to start seeing an eye doctor simply because this med can mess with your vision.I asked the dr allot of questions about this ...things like "what are the long term risks?If it would do something to her eyes would it go away when she goes off of it?" She said so far they have not seen long term effects,since they have always caught it as soon as it started to mess with your vision(hence the seeing an eye doctor regularly)I really didn't want to put her on this stuff,cause i didn't want to have one more doctor to see,have a whole new set of bills and im a little worried about how they are going to check her eyes.But she is now on it and after 4 days of going off the other stuff i started seeing a huge difference in her.PTL! Shes back  to her happy self,shes still tired allot,but not as much as she was and  other then being a little skinny(shes petite the way it is,but the meds have taken her appetite away a lot)she looks healthy.After consulting her doctor i started Hayden on a pro biotic my sister gave me to try called plexus.I also started taking it and have noticed a difference in myself,my appetite and just over all how i feel..Im praying that it helps Hayden as well.
The past year i have been struggleing with my skin.I never had any problems with it before but over Christmas i started breaking out in a rash on my arm, the dr said it was an allergic reaction to something ,put  me on sterroids and a few weeks later in went away,it comes and goes now,and i do have to be careful what kind of soaps i use,but im noticing a patern...it seems to get really bad when i get stressed..and last week it was really bad.I have been soo busy the past couple weeks and it wont be slowing down for another couple weeks...last week i just couldn't seem to get  time to sit down and have my Jesus time.The more i didn't get my Jesus time,the  more stressed i became.finally one day,between the business i was driving to the store,i turned off my music and i just prayed...i named everything that was stressing me and just said "Jesus i give this to you,im not taking it anymore." My prayer was short,it was not a long ,worded prayer.It was simple.2 days later i seen my rash get noticeably smaller and today its almost completely gone. As i looked at my arm the other day and just said thank you God,it came to me...God doesn't need an all out prayer,it dont have to be a 30 minute thing, and sometimes all i need to say is "Jesus" and he knows....and he starts to work,cause that's my surrender,that "Jesus" is me surrendering,and that's when He steps in and takes over. Thank you Jesus!!!Because of this,my song all week has been "Multiplied" by need to breathe,although ive been listening to daves highway sing it(do yourself a favor and listen to these kids sing this song...so moving!)It says in the song ""God of mercy,sweet love of mine,I have SURRENDERED to your design,May this offering stretch across the sky.These hallelujahs be multiplied"
The meaning of the title of this post "somewhere in the midst of this storm"  is cause that's just how i feel right now...like were in the midst of it somewhere....i have cried to a few people over the past couple weeks of how long this all has been going on and how long we have to go yet...but God is giving grace and continues to remind me "one day at a time"and on the days i feel i cant catch my breath...He carries me.
I have had so many people ask over the past couple weeks,"how is it having your husband home all the time?" :)That's  a good question. My answer  is , he is not driving me crazy:)On sunday the kids and i stayed home from church with our dog(her hip popped out of place last week so she had her one leg bandaged up to her belly,making it almost impossible for her to walk let alone go potty..it was interesting!)anyways,Matt went alone and after he left i took a deep breath and was reminded how nice it is to have the house to ourselves..i told him this later and said please dont take offence by this,nothing against you at all!But that was just so good for me!
I do feel that we have to be so much more intentional about our love,our marriage.I say intentional meaning,its so easy for me to just go about my day,doing my thing,with him just here. At first it wasn't like this,but now,i have to remind myself to show love,to feel loved. This month was both our anniversary and Matts birthday,and with all this in mind we made an appoint to go out just us for both of those.And both times it was just so good to connect like that again,outside of the house,away from the kids,and just go on a date.
We are being taken care of...i cannot even tell you how amazing it has been seeing the people who have given to us,people that we haven't seen for years,but God laid it on their hearts...today as i was reading a letter someone sent i just started sobbing as they said "You have been on our hearts and minds continually and lift you up as often as he Lord brings you to mind..."and then said "we wanted to encourage you and let you know how many people are praying for you."i took the letter to Matt ,with tears in my eyes.My Jesus knows just what i need!! We cannot say thank you enough..really!!I told Matt today,i started thinkin about what we would do ,if our church,family and friends weren't helping us out while Matts off work,really,what would we do?It made me panicky to think that there are people in that situation.And again it made me oh so very gratefull.We also got  letter from a couple who have been in our situation as far as having the man of the home injured and out of work for a few months,they sent some money and for some reason,that just blessed me and got me excited,not to think that someday someone else will be in Matts shoes,but to think that we will get our chance to give as well...and i have a whole new look at giving!
Hayden turned 2 on September 18th,We had her party sunday night and it was a blast.We had quite a few people there,since i dont have my family here i usually like to invite some people to fill in for my side:)this year those people were,our neighbors,who my kids absolutely adore,my closest friend and her family,and Matts cousins family.Hayden had so much fun and was so pleased with all her present and her nemo cake which shes been asking for for weeks now:)

The next couple of weeks are so crazy for us,tomorow we leave for church camping.I am soo excited about this,i love church camping and cant wait to go again after 2 years of not going. We come home from that on sunday, and on Tues. we are leaving for florida for a week.Our pastors son Landon is getting married on sat down there ,hes likea  brother to me,and the kids are both in the wedding and i am co-ordinating it.My parents moved to florida 2 weeks ago,so were excited we get to stay with them for a whole week:)Tuesday Hayden also has her first dr appointment with the eye doctor and then from there shes going to see dr lacroix(infectious disease dr.) so we decided we'll pack up our bags Tuesday morning,go to Greenville to Haydens appointments and then drive straight to florida,oh did i menion before we leave for Haydens appointments Matt has therapy?!We sure could use some extra prayers that day:) We get home from florida (on tues or wed.)and then that weekend is our womens conference at our church which i am helping on the worship team and drama team,and i think my  sister in law will be here that weekend as well(hopefully she can keep me sane!:))A few days after womens conference we are taking care of our nieces for a little over a week while Matts sister and her husband go to Israel. Throw in a few doctor appointments,meetings,therapy and runs t the pharmacy and you got B-U-S-Y:)

I hope to be able to post again sometime next week after Haydens appointments but with all this business i dont know if i will get to..
We so appreciate you love support and prayers!

Lead me to the Rock

Whats on my mind....
Health.
Complete health.
I ,in no way,want to take for granted the health we do have,even Hayden.There are far worse sicknesses then hers.
Sick...my daughter is just that.She has an infection.Shes sick.She has been sick since march .6 months.Maybe that's why today I have felt weak.Maybe that's why ive felt on the verge of tears,overwhelmed and just...done.The past week ive told my husband numerous times...im so done with this! When will it end?  When will things be normal. Hopefully by November Matt will be back at work,but Hayden...Hayden will still be doing treatment.I know im sounding negative.Again,im so thankful its not worse,im thankful her treatment is not chemo,im thankful we do know she is getting better,im thankfull I still have my daughter.
But today,has been one of my hard days.
Those have come,they will come again.
There are days I think "if only it was a year from now...When Hayden will be done with  treatment,i wont always wonder,maybe shes doing this cause of her meds..."but then I think..a year?a year from now my kids will be ,well a year older.Im not ready for them to grow up...I have to enjoy every moment NOW.But its hard to do that when my little girl an hour and half after taking her meds comes running to me crying,holding her head and saying "it hurt it hurt" and when I ask her what hurts she says,"my head ,my ears ,IT HURT!"As she holds her head with both hands.
As I tucked her into bed tonight I simply prayed,"Lord give me wisdom!!!Give me discernment!"
Im crying as I write this.
I just don't know when to be concerned,what means what...
I know if I call my doctor tomorrow and tell her this and that Haydens eyes have been looking really glossy and sick like again,shes going to take her off this med,put her on the other one,which means anoter doctor,more doctor visits...more bills.

Haydens birthday is on Thursday...I keep thinking about that...birthdays are celebrations...celebrating her life. A part of me wants to wait...wait to have a party for her,wait to celebrate..until we  can celebrate this infection being gone...Ive been less excited about this birthday then I have with any of the others...for that reason .i want to celebrate...I want to celebrate her being taken off of her meds I want to celebrate hearing the doctor say "the infection is gone" I want to celebrate seeing her healthy!!but this is her BIRTHDAY.2 years ago she came into this world,The Lord gave her to us and she has lit up our lives ever since. She is one of the greatest blessings we have been given.Maybe that's just what she needs...a little celebration.Maybe that's what I need.

Im writing all this...not to complain...but to simply ask you to pray with me,for wisdom,for strength,and for peace..once again.


All day this verse has been going through my mind...
"When my heart is overwhelmed,lead me to the rock that is higher then I."

Satisfied

I have to write...my fingers want to type yet I don't even know what to say...Ill start by  saying..Hayden is doing well...we don't see any doctors again until end of this month and I don't really know much until then..she is once again on 2 meds and seems to be doing well with them..her appetite has decreased allot but other then that I haven't noticed to uch(shes been on the rifibutin for 2 days now.)Her joyful-ness these days has been..well refreshing.And theres somedays I look at her and think "shes going through so much,yet she makes us laugh so much,and she is the apple of her brothers eye..." shes tiny,but she is amazing to me.
Now let me get to what is going on outside of Haydens case...

Oh Jesus,write this post for me...
Last evening we had church re-organization..baisically ,we got new sunday school teachers etc. They have been saying over and over,"if you feel called ,volunteer,dont wait till someone asks.."well don't ya know...ive been feeling called...and ive been praying about it ALOT.so when they asked for junior girls ages 11-13 sunday school teacher..my heart started pounding, (((Light)))i looked at Matt who was smiling(he knew) and confirmed "you just told me you felt called to this" I yelled out"ill do it" Imediately,thoughts races through my mind(((Darkness))) "your crazy,why are you taking this on? you have too much already!its ganna stress you out!"

                          "Do not doubt in the darkness what you learned in the light"
I know this is something God has been calling me to...for a long time...He has been /is and will equipt me for this.
 "Are you going to trust me?" those words I have heard over and over lately.
Everything seems like a battle right now...I feel like there is a battle for my soul. Jesus wins everytime, but the devil don't stop fighting.
We got home last night and Asher went to let the dog out of the laundrey room and said "um mom,how am I saposed to get out there??" I looked out and our cabnet which was full of glass canned goods had fallen completely off the wall..too much weight I guess..I screamed "NNOOOOOO!!!!!!!!!!"

Matt came out and we just stood there,shocked.This was around 10 pm. I wasn't going to ask anyone to come help at that time of night.. so I started cleaning up..Matt kept asking what he can do,but really he couldn't do anything especially with his arm in a sling...I called Matts mom who was sad with me and then said" im going to pray that there will be more jars saved then you think now" as I started cleaning up I was shocked,what looks like total disaster,turned out to be not so bad as far as saved jars...around 1030 I needed to move the cabnit to get to the rest of it,but I couldn't,it was stuck (I was then reminded how badly I need the gym:)) so I text my neighbor ( our neighbors deserve some kind of an award!!)who I had just heard drive in the lane and he came up  and helped me move it out to the garage..by 12 pm I had everything cleaned up .All the jars etc that was out there was sitting on my freezer ,washer and dryer.12:30 I crawled in bed. Feeling grateful as I thought of how bad it could have been had one of the kids been out there or even out little puppy!And grateful for my mother in laws answered prayer that there were more saved jars then I thought there would be.
Mom in law brought us breakfast this morning.But all morning I just felt ...I don't know.Overwhelmed,heavy.I was running around in circles from the time I got up until the kids took naps..wash,dishes,bills,diapers,lunch,dishes again,more wash...somewhere through out all that,my closet door broke off...

 

At this point I felt like it was just test after test...like Job. Then those words again "are you going to trust me?"

Finaly I went back to my bed and just layed there ,I put my phone down and just started praying my arms out ,palms up "Jesus,pour your grace into me,pour your peace into me,pour your love..holy spirit come." such a powerful moment.I pictured Him,over me,pouring into me.Kissing my face.I got up feeling refreshed. And I kept going.A friend text me and said shes bringing me coffee(great news since I was about out!) and right after that Matt told me that we had received some money on our pay pal account.When he told me how much,i cried. I called my mom and told her and between tears she said"i knew this morning was going to be rough for you and I prayed someone would do something for you today." I bawled.i just love my mom!! My friend came with coffee and we sat on the porch for an hour or 2 just talking...EXACTLY what I needed. We cried as we talked about our parents and how special they are. We laughed at the faces her little boy was making, And we beamed as we talked about our kids and how they fill us with joy.It was so good. and now that I think about it...peace and encouragement was being  poured into me while she was here.
 I have seen God, use his people, over and over again over the past couple of months ,to be his hands and feet.Its such a beautiful thing.
Tonight we had supper and after we were done Matt said,"lets go to the park with the kids bikes and get some excersize"we left the dishes and went.After that we decided to go watch Matts nephew and some friends rom churches kids practice football.Around 7 we headed home and our neighbors stopped in a bit. After they left I bathed the kids took a shower and went to let the dog out,i opened the laundrey room door to find my dog on the top step shaking,and about 2 inches of water all over the floor and it was still coming! I called for Matt who ran out to find out hot water heater had rusted out the bottom some how..

He couldn't get the water to stop coming out so we went out by the road,had to dig around till he finally found the lever to turn off all the water. Meanwhile I called Matts dad,cause I knew Matt was going to do something he shouldn't but I didn't have a clue what to do.Matt and I looked at each other,kinda laughed and stood there and just hugged each other as I said "you know I feel like these are just tests,God keeps asking "are you going to trust me" I really didn't know what to pray,but I just said "Jesus Jesus Jesus"

__________________________________________________

The spiritual warfare that goes on,is one we don't see ,sometimes we don't feel,but it is constant.We make choices,and I have chosen to trust God,but I feel like satan is constantly trying to make me "pay" for that.I am understanding the sovereignty of God more then I ever have.He is bigger then ALL of this..Darkness is all around. Can I be a light in the midst of it??!I have nothing but to trust God.And I think that's exactly where He wants me right now.I do not enjoy ,nor like ,what we are walking through.But its where He has placed us right now.It could be so uch worseAnd I have learned so much about my savior over the past couple months .He has stretched me,and nothing but good has come from that. We have had bad days,We have had rough moments,but thank Jesus ,they are not constant.He has given us laughter,He has given us fun,most importantly,He has given us each other.And oh how I love my little family.

"Let your song be the song I sing through the blessing and burdens this life will bring in you alone im satisfied."

Promises...

Today is Saturday...normally Saturdays,i like to relax,not do much around the house and usually do a little something fun...But these days Saturdays feel like Mondays,or Tuesdays,or Wednesdays.So I have to remind myself "todays Saturday." So today the kids and I went grocery shopping with gramma.Matt started videoing football games for the middle school on saturdays.Its so good for him,to get out of the house,to watch some football and to feel like hes doing something.Its been good for me and the kids to,to feel like its a "normal" day.
We got back from visiting my family in pa on Tuesday and have been going ever since.Wednesday morning Matt had therapy and I had to go get some grocerys.I was so extremely grateful that some sweet friends came and cleaned my house while we were gone and when we got home tueday night,our neighbors came up and helped us unload the car.Seriously amazed at how people just rally around us.Thursday morning Matt had a dr appointment,which went good but the doctor did ask Matt to stay in the sling 4 more weeks instead of 2.He was a little bummed about that,as the sling makes him feel so restricted(what its saposed to do I guess)and hes very ready to get out of it,but he is doing what is needed.Thursday Matt rode with his brother in law in the truck and he really enjoyed that as well,any getting out is great for him:).Friday morning Hayden had her dr appointment with the ID doctor and we finally got  bit of good news.She was so happy with how it looked and felt and she says now she only feels 30% chance of another surgery(which was once 99% then went to 50% now 30%)It was so nice to see it all over her face how pleased she was with how the treatment is finally helping!We then discussed Haydens meds.and the stuff she went off of while we were in pa.I know ive said it before but i'll say it again,this doctor is amazing!She is so kind and caring and she listens and really truly wants whats best for Hayden and me! I told her I would be willing to try going back on the stuff that we thought made her grouchy and just see if it does the same thing again.She liked that and said if Hayden has 2 grouchy days in a row,we'll take her off of it and put her on the other stuff...my reason for wanting to try this again is,the other option would mean having to go to yet another doctor to check her eyes regularly for as long as shes on it(still looking like 6 months to a year)I would love to avoid another doctor so were going to see how this goes.We will start her on it again on Monday as long as her lab results from Friday come back clear. Im nervous about this,but feel good about it as well knowing we can take her off of it if it gets to bad.Hayden has been more herself the past couple days then she has in a while,shes happy ,talking more every day and  is just so much fun to be around.I told Matts mom this morning,our kids stages are soo much fun right now and im trying, despite all that is going on, to enjoy it to the fullest.heres a few pictures from our pa trip and since were home..

Asher and his cousin Sky

Hayden got her fill of mimi time

                                                 Me,Hayden and my mom

Asher snuggleing with Matt and my parents house

 

This was her just 2 days after going off her meds..a totally different child.

Everyone asks us "how are you guys doing" when they see us....
Were doing ok.:) we have our good days and we have our bad days.But its amazing how on the bad days,never fails,we get an encouraging text,or someone calls and says there bringing supper or a letter comes in the mail... God promised He would never leave us or forsake us and He continues showing us that through all our friends,family and community of people.Yesterday while driving I seen the neatest thing,im still not sure how to put into words what I seen or what it did for me...It wasn't raining.in fact the sun was shining.The roads weren't wet but I turned the corner and there was a huge bright rainbow, I slowed down and just stared at it till trees started blocking my view,i got past the chunk of trees and I looked all over for the rainbow again but I couldn't find it... Just that morning I had read something about not missing the things God gives us,and immediately I quieted my spirit and heard "don't forget my promises,come rain or shine."
And then I remember this song...

     

I'm running back to your promises one more time
Lord that's all I can hold on to
I gotta say this has taken me by surprise
But nothing surprises You

Before a heartache can ever touch my life
It has to go through Your hands
And even though I keep asking why
I keep asking why

No matter what, I'm gonna love You
No matter what I'm gonna need You
I know You can find a way to keep me from the pain
But if not, I'll trust you
No matter what, no matter what

When I'm stuck and there's nothing else by myself
I'm just sitting in silence
There's no way I can make it without Your help
I wont even try it

I know You have Your reasons for everything
So I will keep believing
Whatever I might be feeling, God, You are my hope
And You will be my strength,
Anything I don't have You can give it to me
But it's okay if You don't, I'm not here for those things
The touch of Your love is enough on its own
No matter what I still love You and I'm gonna need You

But God...

so much has gone on since the last time I posted..wow im not even sure where to start.The last post I did,we were taking Hayden to see the surgeon the next day,so ill start there...I took her to the surgeon for a check up on everything..he was very pleased with how everything looked his words were" it looks better then I expected it would,still more scarring then I was hopeing ,but still better then I expected":) I then started telling him about her virus and that she has been complaining of belly aches on top of the virus..he didn't like that and said hes going to call Dr Lacroix(id doctor) and see what she says... he came back in the room and said she wants me to go to the office right away,she wasn't in that day but I would meet with Dr Jue(we had seen her once while in the hospital) This was on Tuesday ,the day before we were heading to pa.I had so much to do that day but put all that aside.We got to the office and Dr Jue and Haydens nurse Crystal had held off on there lunch break so they could see us...it took a while to catch Dr Jue up with everything that has gone on since we seen her last.She looked at Hayden and then said we need to do labs just to be sure it wasn't the rifibutin(her newest med she was put on)I asked her about us going to PA the next day,and she said shes not going to tell us not to go but to make sure they could get a hold of us at anytime and make sure we had a plae to go for primary care if needed
We then went down to the main floor and went to do labs..he app with the surgeon was at 10:45, by this time it was 1 .I was hungry but Hayden was still feeling very sick and wasn't eating much so she was fine. We got her labs done and thank goodness she pooped while we were in there,they needed a stool sample and wanted me to take it to the nearest hospital when we got home if she wouldn't have went while we were there..ive never been so happy to change a messy diaper:)They told us they would probably get back to us that evening about labs..
We headed home around 2 but I had to stop at target to get a few things before we left for the trip...by the time we got home it was 4:45. I was soo exhausted.Thank goodness for a meal in our fridge that I popped in the oven.After supper they called about labs and said she definitely does have a virus,but everything looks good as far as antibiotics go,meaning she wasn't allergic to anything she was taking."good" I thought,by tomorrow when we get to pa she will be happy and fine. I was up late that evening trying to get stuff together for the trip.Wednesday morning Matt had therapy at 815 am and by 10 we were on the road..Hayden still didn't seem right..no fever,or any other symtoms of the virus but she looked so sick out of her eyes and she was so tired . Around 3 pm we thought about it that she seemed to be perking up a bit."here we go,now shes feeling better"i thought..We pulled into mom and dads around 8 that evening,i gave Hayden her meds and my sister was holding her and said"why is her eye purple?"i looked and sure enough,her eye lid looked black and blue colored..i didn't know what was up but didn't think much of it..that evening and the next day she was not herself,her eyes drooped,she had diarrhea ,she was constantly tired and laying around and she wasn't eating..Finally Thursday afternoon I googled the meds shes on(I did this before but wanted to check again to refresh my memory) and sure enough side effects of these were"extreme tiredness,bruising,irritability,stomach aches" and more..all of which matched how Hayden was feeling..i called her doctor and left a message saying"is there any way we can cut the dose back or take her off of the one" they called me that evening and said Dr Lacroix said to take her off rifibutin until we get back home and then we will do repeat labs and see whats going on and where to go from here.
Within 24 hours of her going off her rif. she was happier.and it seems as though everyday since then she seems better.Shes still tired,but she is also still on another antibiotic that would make her sleepy as well..She has been taking 2 naps since were up here nd going to bed as early at 730.Im learning ,that maybe for the next 6 months to a year or however long her treatment lasts,things will just be different.Maybe she will have to take 2 naps everyday..thats ok.Maybe we will have to be more strict with making sure she gets her sleep at night..thats ok too.
We are having soo much fun here in pa.And being with my family is just soo good for me,and the kids.Matts not been feeling well since were here..He has a cold and He fell on Thursday evening!!We were at my sisters sitting outside and his chair was a swivel one,well the top of the chair broke off(it was brittle from being out all winter)and Matt,who couldn't catch himself one armed,fell hard.Hes had a head ache on and off since then.:(
Thursday was also the day that my sister helped me can...let me re-phrase that,she pretty much did everything,bought everything(her and my mom) and I just did what she told me to do...so awesome..we did pizza sauce and tomatoe bisque soup.I cant tell you how happy I am with my huge stock up of all this!I have the worlds greatest family.
On Friday I got to work at the market I used to work at when I lived here,for my cousin and aunt and uncle..it was a long day (left at 5am got home at 7pm) but it was good and I had allot of fun..i worked with some of my old crew who showered me with love and gifts and gave me some good laughs as well.It was a good day.
Saturday Matt went with my dad to do a demo (for my uncles business as well) doing a demo is giving out food samples(like you see at Costco or sams).They go to different markets and hand out samples.Matt had fun doing it and made a little money as well.
When we decided to come here I thought..ok im going to go up there ,relax,let my family help with my kids,and not think about everything that's going on in our lives for one week...I am relaxing as much as I can,and my family (especially my mom) has helped soo much with the kids,but I am not forgetting..Saturday afternoon,after having a difficult time trying to take a shower with two kids,one of which was hanging on my leg screaming for me to hold her,i started crying...20 minutes later I was still sobbing.Its hard for me to write about this...I hate feeling like that..i don't like when I let my mind go there and ask "God why?Im short with my kids,why would you trust me with this much stuff if I take it out on my kids?" I layed on the bed and for the first time since all this went on ,instead of praying to God in a calm way and asking him to show his glory,i just cried and told him how hard this is for me... and I felt His love...I didn't expect to feel that..i think I always think ,if I let God know im unhappy with what Hes taking me through or im scared or that I feel like im failing,then hes going to sit me me down and tell me,you just keep going.But I don't know why I would think that an all knowing, all loving,all powerful God wouldn't hold his child while she cries,why wouldn't he wipe her tears and just say"its going to be ok" why wouldn't my Jesus,who loves me more then anything,just listen to me like my best friend would,and then cry with me....He showed me something that day...That He would...That its ok to share with him my hurt through all this,my fears,my worries, my fragile heart and the side of me that's not feeling so strong.Oh how He loves me.
That night my sisters and mom took me out to eat and did a little shopping,and they each blessed me again and again.And it was so good for me to take some time out for myself.I need to remember to do that more.
Our family and friends and have literally showered us with love since were here..ive been so surprised again and again since were here at how many people know Haydens story and tell us there praying for us.And im constantly reminded how beautiful the body of Christ is.And to all of you that have prayed/are praying for us,blessed us with gifts ,and given us hugs and are walking with us through this...thank you from the bottom of our hearts.I love each of you so incredibly much.Your support and love is what makes this easier.
Were planning on heading home Tuesday sometime...im not ready really.But ill be ok..Theres allot waiting when we get home,Matts therapy and dr appointmens,Haydens repeat labs and figuring out what to put her on..But God. I have to remind myself of that again and again...when im overwhelmed,when im stressed...but God.

dancing in the rain...

Today was another one of those,started out normal ended up crazy kind of day...Lets start last week...After meeting with Haydens ID doctor,we once again switched one of her antibiotics(I had mentioned this before,this new one costs $400.00) ever since we switched Ive felt like Haydens been extra fussy...although ive felt like shes not been completely herself since her first surgery(could have something to do with the treatment shes on)Somewhere in between all this,after much talk,Matt and I decided to go up to Pa for about a week.My parents are moving to florida next month and weve been wanting to go up one last time before they move,not to mention that I desperaely need some time with my family and a little time "off". I made some calls and figured out I could work a day to pay for half of the trip up there,so we decided we would leave Wednesday after Matts therapy.
Over the weekend,starting Friday Hayden seemed even more grouchy and whiny.Friday night we went out with some friends and the kids stayed with Matts parents,When we got home it was close to 12 and both the kids were awake..so Saturday I just figured she was extra tired and sick looking cause of loosing so much sleep.Saturday night she went to bed with 102 fever,but by the time I went to bed her fever was completely gone.so Sunday morning we went to church,she looked really sick out of her eyes but she didn't have a fever at all...during church she was pretty mellow.We ate lunch with Matts aunt and uncle and cousin, and just before we got our food she started crying,and wouldn't stop,so I held her,she layed against me and within a half hour I felt she was really warm again,when we got home she had a fever again.

Sunday evening Matts parents came over and Hayde fell asleep on grandma(this NEVER happens..she is a only sleeps in her bed kinda girl)

and as the evening went on her fever just got higher..I called her ID doctor and we talked about what was going on,she seemed a little unsure since Haydens on so many antibiotics it didn't seem as though she would have cought a bug,so she wanted to see her to check to see if it was her meds or something else..i had an appointment set up with the surgeon Tuesday and since her id doctor knew its an hour drive for me she asked if I think shed be ok to wait till tuesay,I thought she would be ok,but she said if I feel any change about that to call in and they will try to see her before . Hayden went to bed last evening with a 103.2 fever... That part is just so hard for me..i hate that anytime she gets sick I just don't know if shes sick cause shes just sick or if it has something to do with her infection or if it has to do with her meds.I text my dear friend last night and told her"i feel like I need prayer,stuff like this just makes me think will this stuff with Hayden ever end??!feeling heavy and worn and like I have no idea what im doing or should do.." I know it will end,but there seems to be so many bumps in this road...and there are times I feel so un-equipt for this..but we keep going... And God keeps reminding us of His promises.."I will never leave you or forsake you"
This morning we got up,and her fever was gone again,and it didnt show itself during the night either..so I thought ok maybe shes feeling better but as the morning went on it seemed as though her eyes just kept looking more sick like and she was just a grouch.I finally I called her pediatrician whose a half hour away and asked if she could see her today,with going to Pa Wednesday i wanted to make sure she was clear to go,or if we should put it off for a week.She said yes she could see her in about 2 hours,so I took a shower and we headed that way.Turns out she has a virus,which is good news,funny I know that that would be good news,but in this situation it is.She said shes at the end of it so that made me feel better.
I came home to a meal made by a young girl in our church,also someone from out church was making us super for this evening,a friend from church stopped in with  a huge beautiful mum to put on my porch,as if all this wasn't enough,over the weekend a friend had given us some cash to pay for half of our trip to pa,but today when I got the mail there was a check in there to pay for the entire trip...plus some.I came in to Matt with tears in my eyes as I read a card a friend had sent us...God continues to show Himself faithfull and continues to go above and beyond for us.What could have been a stressfull ,tear filled day,instead I walked outside this evening with a smile on my face thinking "were just so incredibly blessed"

                                              (two of our sweetest blessings)

Yesterday at church we sang "bless the Lord"" ive always looked at this song like...that scenario when your so weak,you just cant raise your hands to praise Him,but you need to  ,you want to,so you tell your soul.."Bless the Lord" and slowly your hands begin to raise,and soon your face down on the ground worshipping..i love that song for that..and I have never felt that more...like those days I feel so weak,and I just say "im choosing to praise you,im choosing to worship you..now worship!" ...
                                       "SING LIKE NEVER BEFORE OH MY SOUL"


Matt is doing pretty well..his therapy is going extremely well and his therapist says its looking so good he thinks he might cut him back to once a week instead of twice.He is getting a little bored ,but as time goes on and he can start driving he'll find more things to do.We are finding little ways to enjoy this part of our journey..and the other morning as we were sitting out on the porch at 10 am watching the kids play it came to me..
                                             "this is us,dancing in the rain"

 

Tomorrow Hayden has an appointment with the surgeon again,not real sure what hes going to do or what we'l be discussing but im excited to see what he has to say...and im sure ill write about it sometime soon.Tomorow is a super busy day for me with getting ready to leave Wednesday morning but my sweet mother in law text me tonight and she said " I will pray that you will have more then enough time for everything" ..isn't is awesome that we can ask God for anything?!
Im hopeing both my kids are happier tomorrow,Asher has a canker sore in his mouth that's been making him a bit crabby too,and this evening I thought I was going to loose it as they were both crying and begging me to hold them(there both a bit scared to let Matt hold them cause they they think they will hurt his arm)i told Matt tonight,i just cant wait to go up to Pa and have mom be able to help me a bit and to have the kids distracted.im .just.so.excited!:)It feels like such a God kiss that were able to go.And I fully intend to go up there,relax and de-stress:)

(Asher getting a head start on the relaxing part:))

I need to get some sleep tonight...thanks for reading.It still amazes me all the people that say they read my blog..so thank you:)

Waiting for some good news...

Today was Haydens first appointment with her infectious disease dr since her last surgery...i think everytime i go in there, i go in thinking "maybe today we will leave here with good news"
..today i was disappointed once again. Haydens id doctor is just the sweetest women and i absolutely love her..she's the kind of women i would have coffee with you know?:)She  always gives me plenty of time to ask questions.We talked allot  and i told her about Matt having surgery and being off work,and she was so sorry about that and seemed very concerned about how we would pay for Haydens treatment...then she checked Haydens neck and what the surgeon thought may have been scar tissue, Dr Lacroix today said she's pretty sure its yet another lymph node flairing up.:(The good thing is ,its not growing as fast,which is good because Dr Abrams(surgeon) would prefer to wait at least 3 months before performing another surgery on Hayden.Dr Lacroix(id doctor)said today though that Dr Abrams really doesnt want to do another surgery if at all possible,since theres another nerve around that spot again.We then discussed the treatment plan Hayden is on(antibiotics)...back after Haydens first surgery ,in june,they had prescribed her an antibiotic called rifibutin, Its for infections but it expensive(like $400.00)when we went to our pharmacy(where weve been going since all this started back in april)the pharmacist knew we were "self pay"(were on a sharing plan,we pay up front and then get reimbursed a few months later)and she told us about how exspensive this stuff is,she asked if we would be ok with her checking with the dr to see if she can give her rifamptin instead(its a "cousin" to rifibutin)and its also MUCH cheaper($80.00)When we picked up the stuff she told us that's what they ended up doing,so since june Hayden has been on  rifamptin(along with other antibiotics)2 weeks ago i got a call from  the ID doctors office saying the rifamptin ,according to labs is not helping so they are switching her to something else.Today when Dr Lacroix seen this she wasn't pleased,the meds they switched her to,from what i understood have side effects with younger children and one of them is messing with there eyes.She asked if Hayden knows her colors yet,which i replied no and she said,well if shes going to continue on this med they switched her to ,shes going to need to start going to another dr regularly just to make sure this med isn't messing with her eyes,which will be hard to tell since she don't know her colors and that's how they test it.I asked her what she wants me to do and she said"go back to rifibutin(the $400.00 antibiotic)She said we know that she is susceptible to that and she felt that would be the most helpful if any.so we decided to do so.Bless her heart,she came back in with a coupon($364. instead of $400) for the stuff cause she felt so bad .A few other questions i asked...
"Have you seen cases like this before..where it just goes on and on?" She answered,"yes,and i hate to tell you this but often with this,we will deal with it,have surgeries,do treatment and 2-3 years later,it comes back again."
I then asked her is she thinks that this treatment will help..She said with a confused look "im 50/50" . I cant help but think things like "it hasn't helped in the past and that bump has grown since shes been on it..." but i know my God...Hes a God of miracles. And if He chooses to heal her i will rejoice and if He chooses to allow us to continue walking this difficult road...i will still praise Him.
Tomorrow i have to go pick up the pricey antibiotics,but first i want to call our sharing plan and see if they cant work something out,given that Matt is not working and we have no income,where they could reimburse us quicker then a few months.Im praying they will agree.If not,i have learned God will make a way. He proves himself faithful every time.
Matt is going a little over a week now since surgery.Hes feeling good,Asher only asks him about ten times a day,"how are you feeling now dad?" ,i think he thinks ,if hes good then they can go play:/.He will be in a sling for 6 weeks and while hes in that,he really cant do anything with that arm,once hes out of the sling he will be able to do more,but still not lift any weight.
We had a pretty good week,it had its ups and downs...ok it had allot of ups and downs..theres so much involved in all of this...so many emotions...so many battles i feel were fighting..and its wearing. On us,on me. I feel like i have so many things i need to do or get done in a day,and theres moments when he asks me for something small and i just snap,and i hate that!My prayer last week and again this week has been that Jesus would take over my body,my mouth and overpower my human-ness, i guess you could say.
This week is super busy for me...i went from being a relaxed ,not real busy stay at home mom to a really busy one.(i already miss the first)between doctor app. and therapy,im trying to get my rock candy made,i want to do some canning end of this week AND i have a bunch of things to send into CHM(our sharing plan)along with making calls to them to figure some things out...but i keep telling myself.."one day at a time"
Right around the time that we brought Hayden home from the second surgery i started a book of writing things down that people have done/given us over this time..i wish i would have started this when Hayden went to the hospital the first time back in April but just since i started this in july i already have 3 pages full.. i write the dates ,who it was,what they did or brought..and its just amazing...how many people have done so many things...and how everyones gifts come out in different ways...some have sent flowers ,some have brought meals,some have called and asked if they can pick stuff up for me(that would be my amazing neighbor who has done SOOO much for us over the past few months)and on sunday someone even left a freezer meal in our car,not saying who it was from but just that they wanted to bless us,that was so neat! I wanted to write this stuff down,to rememeber what others did for us,how it blessed us,but also for ideas of things to do for others when they go through hard things.
I want to leave you with something,i actualy just readin my devotions...wow.im sitting here,once again in amazement at how God has us right where he wants us...that's so comforting to me...
"Anticipate comeing face to face with impossibilities:situations totally beyonw your ability to handle.This awareness of your inadequacy is not somehitng you should try to evade. It is precisely where i want you.the best place to encounter Me in My Glory and Power.When you see armies of problems marching towards you,cry out to me!Allow me to fight for you.Watch me work on your behalf as you rest in the shadow of My Almighty Presence."
Thank you Jesus!!