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.
Sunday, August 31, 2014
Monday, August 25, 2014
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:)
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:)
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.
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"
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:)
Monday, August 18, 2014
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!!
..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!!
Tuesday, August 12, 2014
Finding our new normal...
Well , the week has begun...ive been so curious as to how this would feel,having my husband home all day everyday,and so far(I realize its only day 2) its been kinda fun. Yesterday we got to drink coffee and hot chocolate and have devotions and prayer time together in the morning. That was so special,having devotions together isn't something we do..and its gotten even more rare since Hayden was born... but doing this together ,with all that were going through felt so ..powerful.It set the tone in our day I feel.
Over the weekend Matt slept allot,his pain meds were making him really jittery yet tired all at once.so he had a hard time sleeping at night yet felt so drousy during the day.We changed them on Monday and since then he seems much more alert and himself. He goes to the dr on Friday to start therapy and get more directions on what he can and cant do with the sling on.Its been interesting so far...him not being able to help much.Bless his heart,he has helped in every area that he can and the kids have been so great with giving daddy his quite time and not jumping all over him.
Friday was also the day I had an appointment for Hayden with the ID doctor.I changed that the day of matts surgery since I found out Matt would have an appointment then and now Haydens dr appointment is Monday. Weird to say ,but im excited about meeting with Dr Lacroix again! We haven't seen her since the day before surgery and I feel like we have so much to discuss, like Haydens meds(we changed them last week since the one wasn't helping anything according to lab results),Im eager to see what she will say about how Haydens neck is looking.So far im not seeing any lumps,other then that place that Dr Abrams had said he thought was scar build up. And just ask her if she thinks we'l need another surgery.Dr Abrams ,the surgeon , thinks she wil but I have not heard dr lacroixs opinion yet.Last week(Matts surgery week) I had to re-adjust my mind.Knowing Matts surgery was that week,i couldn't think about Hayden and what was going on with her. Now that Matts surgery is behind us, he now has appointments with therapy etc that I have to take him to since he cant drive for 6 weeks.And then Hayden has appointments at least every other week.On top of that I have prescriptions that seem to be being filled constantly(I have one waiting to be picked up ,but im using every last drop of the last one before I will force myself to drive to the pharmacy to get it) But I feel ok about all this..i feel...peace.(something I lacked last week)Ive been so challenged in all this....with accepting the peace that God gives. What were walking through right now is so far, the hardest thing we've gone through since Matt and I have been together.Ive never questioned what God is doing like I have with this.But yet when I accept His peace...I stop questioning...
Over the weekend Matt slept allot,his pain meds were making him really jittery yet tired all at once.so he had a hard time sleeping at night yet felt so drousy during the day.We changed them on Monday and since then he seems much more alert and himself. He goes to the dr on Friday to start therapy and get more directions on what he can and cant do with the sling on.Its been interesting so far...him not being able to help much.Bless his heart,he has helped in every area that he can and the kids have been so great with giving daddy his quite time and not jumping all over him.
Friday was also the day I had an appointment for Hayden with the ID doctor.I changed that the day of matts surgery since I found out Matt would have an appointment then and now Haydens dr appointment is Monday. Weird to say ,but im excited about meeting with Dr Lacroix again! We haven't seen her since the day before surgery and I feel like we have so much to discuss, like Haydens meds(we changed them last week since the one wasn't helping anything according to lab results),Im eager to see what she will say about how Haydens neck is looking.So far im not seeing any lumps,other then that place that Dr Abrams had said he thought was scar build up. And just ask her if she thinks we'l need another surgery.Dr Abrams ,the surgeon , thinks she wil but I have not heard dr lacroixs opinion yet.Last week(Matts surgery week) I had to re-adjust my mind.Knowing Matts surgery was that week,i couldn't think about Hayden and what was going on with her. Now that Matts surgery is behind us, he now has appointments with therapy etc that I have to take him to since he cant drive for 6 weeks.And then Hayden has appointments at least every other week.On top of that I have prescriptions that seem to be being filled constantly(I have one waiting to be picked up ,but im using every last drop of the last one before I will force myself to drive to the pharmacy to get it) But I feel ok about all this..i feel...peace.(something I lacked last week)Ive been so challenged in all this....with accepting the peace that God gives. What were walking through right now is so far, the hardest thing we've gone through since Matt and I have been together.Ive never questioned what God is doing like I have with this.But yet when I accept His peace...I stop questioning...
"Peace is not the assurance that what God is doing is easiest, nor is it the assurance that what God is doing is fastest.
Peace is the calm assurance that what God is doing is best.'
-a friend of mine sent me a devotional link the other day..and these words stuck out to me and shot me right between the eyes...last week I struggled feeling at peace...but reading this...made it so clear to me..so easy.And now ive been trying to find little ways that this,what were going through,is God doing what is best... moments like yesterday sitting next to my husband at 830 am reading devotions together and then all of us holding hands and praying...that made me think " maybe this really is whats best."
I want to write about my little Asher for a bit... Hes been such a big guy through all this..being shuffled here and there through the surgeries and hospital stays..and yet he seems fine with it. He a people person and loves to be with his friends so I don't think he minds it to much although I hate it for him.He looks out for Hayden and now,his daddy to. And since Matts surgery,he is learning and doing so many new things on his own. Taking daddy water and pills,emptying the trash,clearing off the supper table,and even learning to bath himself(ok so im a bit of a clean freak when it comes to bath..so him "bathing himself" means I go after him and do it again) he is so caring to Hayden, and has been helping me put her to bed at night and pray with her.He says the Lords prayer to her before she goes to bed. He also gets to sleep in my room with me since Matt cant sleep in a bed,and sleeping in our room..well that's reward enough for him.He loves it! Im so proud of him and I can already see this teaching him to be a little man:)
Tonight Hayden and I were having some one on one time while Asher was back in the room with Matt watching TV. I asked Hayden if shes ready to go to the dr again to which she quickly replied "No!" I asked her(just to see if she even knew) what the doctor does to her ...she pulled back her hair,touched her neck and said "owie" .Im not sure why this shocked me,probably because shes not even two yet (although she will be next month!)and she knows more about doctors then Asher even does.Sweet girl.
We are so blessed,by the friends we have,the church we have,the family...Its just so amazing how many people care about us ...and its so humbleing.
I cannot say thank you enough to everyone who has brought us meals and goodies over the past week,i haven't had to cook yet since Matts surgery and that's been great since im still trying to figure out our new routine with having Matt layed up.
I wanted to do something,to make some money and to give Matt and I a little something to do together at home so I decided to make rock candy.I had made this before and sold it on facebook,but last time I didn't ship any(since I live in Pa and over half of my facebook friends are from the north)but this time I decided I would..I posted it this afternoon and let me say,i was not expecting the response I got!! Ive already got 75 + bags ordered!Im excited about doing it.A little nervous as im not sure how long it will take me nor how much stuff ill need but im excited...to be able to do something without having to leave the kids and Matt.So thank you if you ordered some, and hopefully it wont take me too long to get it out to you!:) Btw, if your reading this and are not on facebook and would like to order some you are welcome to ,just email me at- onymullet@gmail.com . there $4.00 a bag plus shipping if you need it shipped. And if your in a hurry for it,well you might not want to order,im expecting at least 2 weeks before I have everything ready to send out.:)
Time to go to bed...thanks for reading:)
Thursday, August 7, 2014
Surgery week
I would be lying if I said this week has been an easy one....the truth is,its been really rough. Sunday morning both kids woke up with a cold and Asher had a bad cough.We stayed home from church and rested hopeing it wouldn't last more then a day or so..(its thursday and they both still have nasty colds:(
)Monday evening Hayden drank some nail polish remover, we knew she didn't have much but I panicked not knowing what happens when someone drinks poison,so we took her to the ER.Thankfully the nurse was nice and called poison control before doing anything else,who told her that given the amount she had(not much if any swallowed) that the most that would happen ,she would have a stomach ache,they sent us home and told us to give her lots of fluids and something to eat. We weren't in long, and were so thankful that she was ok and it wasn't anything to worry about.And we laughed about it later as I told my family how Hayden handled going to the hospital like it was just a walk in the park. Wednesday I got up knowing that the next day was Matts surgery and the rest of the week I would be tending to him so I wanted to get things done. First on my list was figure out some of the bills that I had to send in to our health care program. We don't have an office at our house so I do this at the kitchen table..i was at it no more then 5 minutes and my sweet daughter came up and wanted to draw,not on any papper,but only on my bills.When I told her no she was heartbroken and entered into a huge crying mess...after 5 minutes of her crying I realized I was getting very frustrated,i hadn't gotten anything accomplished and I felt as though I was on the verge of falling apart.I called my mom in law and asked if I could come do the stuff there(I often do that so I can get it done sooner and have a desk to work at)she so willingly said "of course" so just like that we were out the door.I got my stuff done and we came home at 12. At 1 I decided to let the kids swim in the little pool for an hour before nap time...we were out on the deck about a half hour when Hayden walked away from me and I noticed a rash on her back...Since she is on antibiotics(and she just had a change in her antibiotics on Monday)things like this the doctor needs to see her to make sure its not a reaction to her antibiotics...I so didn't want to call the dr,so I sent a picture to my mom hopeing she would say"i wouldn't worry about it" well she called right back and said"that looks kinda bad.." so I called the dr and an hour later we were on our way to the pediatricion.On the way there I called my sister and sobbed to her on the phone..."I feel so overwhelmed!!somedays I feel like this is sucking all the life out of me..why cant you live closer and make my supper tonight!!"I vented,i felt better and later that day we were joking about my little episode:) The dr visit lasted really long since we had to wait an hour before being seen..but she confirmed it was not a reaction but rather a heat rash and she sent us on our way.
That leads us to today...the day of my husbands surgery, the day I have been dreading,for many reasons. I depend on my husband for so many things,and I love being treated like a lady.
I love that when we go places together,were a team,he straps Hayden and Asher in there carseats while I get everything stuffed in the diaper bag and lock up the house.I love that jobs like mowing taking out the trash,bathing the kids while I do the dishes after supper,and so much more,are things he does or helps me with. And I know I can do all these things,i know ill be fine to do them...but these past four months,im not going to lie to you all, I have felt worn, I have had days(and this week there all clumped together) where I have felt so tired and overwhelmed, that adding all that other stuff to my plate I cant even wrap my head around...but I have to take one day at a time.
This morning as I was waiting in the lobby for the surgery to be done,i started praying ,about my worries my fears,my overwhelmed spirit..and God layed on my heart to pray for a supernatural strength and energy for me...and a rest and peace for Matt.Will you pray that with me
Today while we were back in the pre-op area I heard a child crying, screaming.I don't know what was going on,but I know a nurse was holding her and she was crying for a while...after about 5 minutes of it,i looked at Matt and said,"i cant take that..that brings back a whole flood of memories,of emotions" and next thing I new I was sobbing,sitting there beside my husband who was about to go under for surgery and I couldn't pull it together.The more I tried to stop crying ,the more I cried. He looked at me an said "whats going on?" and I admitted something,i don't like admitting "im just not in a good place right now" he asked if he should call someone to come be with me ,but that was the last thing I wanted...
The surgery went good today. I met with the dr after surgery and he said this tear was really bad. He said Matt should have came to see him long ago. He stressed and stressed how careful Matt needs to be the next 6 months or so.He said the rate for this being succesfull is about 50/50 and that depends on Matt and how carefull he is. He also said we do not want to do this surgery again,he don't know how much he could help him if he'd have to do it again..all the more reason for Matt to be carefull.He expects Matt to be out for about 6 months,he said it could be sooner(pray pray pray!) but hes planning on six months.
a friend told me the other day "your just so positive through all this" and I said "I have to be,in the moments that im not,its the most depressing thing.I cant stay there.I have to be positive." But it seems like ever since I said that,i feel like im under attack...and I have the tiniest bit of fight in me.And then I remembered these words...oh these words..."When my heart is OVERWHELMED, lead me to the ROCK that is HIGHER THEN I!!!!" I keep saying that over and over..What would I do,where would I be without His promises..without His grace,without His peace. Those moments that ive felt so often this week...I need to fix my eyes.again and again...cause when I do..i feel the strength.The strength I need.That strength is what brought me through so many hardships in the past,and that strength is what will bring me through every hardship in the future.
This weeks been hard.This week has fought me hard. This week isn't over,but I will not fear tomorrow,cause His mercies are new every morning.
Next month will be 5 years of marriage for us.
In those 5 years we as a family have gone through 7 surgeries(2 of which were C-sections) 4 of those surgeries were just this year.But we are together,we have love we have faith and we have family.And that is so much more then allot of people have!Im so thankful for that.And I know that these next couple months will make me even more grateful.Gods going to bring something beautiful out of all this..I cant wait to see it.
)Monday evening Hayden drank some nail polish remover, we knew she didn't have much but I panicked not knowing what happens when someone drinks poison,so we took her to the ER.Thankfully the nurse was nice and called poison control before doing anything else,who told her that given the amount she had(not much if any swallowed) that the most that would happen ,she would have a stomach ache,they sent us home and told us to give her lots of fluids and something to eat. We weren't in long, and were so thankful that she was ok and it wasn't anything to worry about.And we laughed about it later as I told my family how Hayden handled going to the hospital like it was just a walk in the park. Wednesday I got up knowing that the next day was Matts surgery and the rest of the week I would be tending to him so I wanted to get things done. First on my list was figure out some of the bills that I had to send in to our health care program. We don't have an office at our house so I do this at the kitchen table..i was at it no more then 5 minutes and my sweet daughter came up and wanted to draw,not on any papper,but only on my bills.When I told her no she was heartbroken and entered into a huge crying mess...after 5 minutes of her crying I realized I was getting very frustrated,i hadn't gotten anything accomplished and I felt as though I was on the verge of falling apart.I called my mom in law and asked if I could come do the stuff there(I often do that so I can get it done sooner and have a desk to work at)she so willingly said "of course" so just like that we were out the door.I got my stuff done and we came home at 12. At 1 I decided to let the kids swim in the little pool for an hour before nap time...we were out on the deck about a half hour when Hayden walked away from me and I noticed a rash on her back...Since she is on antibiotics(and she just had a change in her antibiotics on Monday)things like this the doctor needs to see her to make sure its not a reaction to her antibiotics...I so didn't want to call the dr,so I sent a picture to my mom hopeing she would say"i wouldn't worry about it" well she called right back and said"that looks kinda bad.." so I called the dr and an hour later we were on our way to the pediatricion.On the way there I called my sister and sobbed to her on the phone..."I feel so overwhelmed!!somedays I feel like this is sucking all the life out of me..why cant you live closer and make my supper tonight!!"I vented,i felt better and later that day we were joking about my little episode:) The dr visit lasted really long since we had to wait an hour before being seen..but she confirmed it was not a reaction but rather a heat rash and she sent us on our way.
That leads us to today...the day of my husbands surgery, the day I have been dreading,for many reasons. I depend on my husband for so many things,and I love being treated like a lady.
I love that when we go places together,were a team,he straps Hayden and Asher in there carseats while I get everything stuffed in the diaper bag and lock up the house.I love that jobs like mowing taking out the trash,bathing the kids while I do the dishes after supper,and so much more,are things he does or helps me with. And I know I can do all these things,i know ill be fine to do them...but these past four months,im not going to lie to you all, I have felt worn, I have had days(and this week there all clumped together) where I have felt so tired and overwhelmed, that adding all that other stuff to my plate I cant even wrap my head around...but I have to take one day at a time.
This morning as I was waiting in the lobby for the surgery to be done,i started praying ,about my worries my fears,my overwhelmed spirit..and God layed on my heart to pray for a supernatural strength and energy for me...and a rest and peace for Matt.Will you pray that with me
Today while we were back in the pre-op area I heard a child crying, screaming.I don't know what was going on,but I know a nurse was holding her and she was crying for a while...after about 5 minutes of it,i looked at Matt and said,"i cant take that..that brings back a whole flood of memories,of emotions" and next thing I new I was sobbing,sitting there beside my husband who was about to go under for surgery and I couldn't pull it together.The more I tried to stop crying ,the more I cried. He looked at me an said "whats going on?" and I admitted something,i don't like admitting "im just not in a good place right now" he asked if he should call someone to come be with me ,but that was the last thing I wanted...
The surgery went good today. I met with the dr after surgery and he said this tear was really bad. He said Matt should have came to see him long ago. He stressed and stressed how careful Matt needs to be the next 6 months or so.He said the rate for this being succesfull is about 50/50 and that depends on Matt and how carefull he is. He also said we do not want to do this surgery again,he don't know how much he could help him if he'd have to do it again..all the more reason for Matt to be carefull.He expects Matt to be out for about 6 months,he said it could be sooner(pray pray pray!) but hes planning on six months.
a friend told me the other day "your just so positive through all this" and I said "I have to be,in the moments that im not,its the most depressing thing.I cant stay there.I have to be positive." But it seems like ever since I said that,i feel like im under attack...and I have the tiniest bit of fight in me.And then I remembered these words...oh these words..."When my heart is OVERWHELMED, lead me to the ROCK that is HIGHER THEN I!!!!" I keep saying that over and over..What would I do,where would I be without His promises..without His grace,without His peace. Those moments that ive felt so often this week...I need to fix my eyes.again and again...cause when I do..i feel the strength.The strength I need.That strength is what brought me through so many hardships in the past,and that strength is what will bring me through every hardship in the future.
This weeks been hard.This week has fought me hard. This week isn't over,but I will not fear tomorrow,cause His mercies are new every morning.
Next month will be 5 years of marriage for us.
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