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.