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 !
Friday, October 17, 2014
Thursday, October 9, 2014
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!:)
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!:)
Thursday, September 25, 2014
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!
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!
Sunday, September 14, 2014
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."
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."
Thursday, September 11, 2014
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...
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..
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."
Saturday, September 6, 2014
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..
Me,Hayden and my mom
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...
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
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
Sunday, August 31, 2014
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.
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.
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