dr appointment # ????

Today is a beautiful day here in North Carolina,it feels like my favorite season...FALL. This air is putting me in such a happy mood:)And this morning I have my neice(matts sisters daughter) Mariah here helping me,i have a bunch of things I want to do while shes here,but here I sit,on my front porch with the kids sitting in front of me on the steps blowing bubbles,there plates sit here  on the little table in front of me with pieces of scrambled eggs on them. Ill get to my work ,but for now I feel, peace,contentment,happiness, and rest. And I praise my Jesus for that.for breathing new life into me this morning. Despite the constant worries that want to pop up in my head again.
Yesterday was Haydens dr appointment with the surgeon, I really didn't know what to expect with this but I had allot of questions. My friend Crystal went with me again,something I didn't have to ask of her,she just offered and It meant the world to me. The hour drive down to Greenville and back gets a little boring when its just Hayden and me,since she just sits in the back and watches miss patty cake over and over(I think I have the movie memorized) Dr Abrams was once again very pleased with how the incisions look and praise the Lord, he said that the bump were seeing he believes is scar build up. But then he also said that he still would not be surprised if he would have to go back in and get more infection out. I told him I wish he could tell me for sure yes or no about another surgery and he said "well just plan on us not doing it then if we have to it will be a surprise,but I really wouldn't be surprised at all if we'd have to go back in"  so that didn't help me much:/ another thing I asked was how will we know when its time to do another surgery and he said "the same thing will happen as it has before,it will just get bigger and bigger" he said that the rest of the infection is behind a muscle or tissue so its harder to get to.The last dreaded question I asked was "how long is this going to go on yet?when is it all over??"to which he replied "another year" ugh I think my heart sank. I don't  want to complain about the treatment there giving Hayden ,cause they are helping her and I know that what were dealing with is so minor compared to allot of people, but I keep thinking everytime the antibiotics get close to being empty "maybe this will be the last time I get it filled" cause to me it seems like soo long that shes been on them,but I guess not.
On sunday we noticed a rash on Haydens neck,not a big rash,not real red.I called her Id doctor yesterday and she wanted to see her but I couldn't get there in time so she asked me to set up an app. with Haydens pediatricion(so I don't have to drive an hour again today)I got it scheduled for today at 3:50 but I this morning her rash is looking a little better and im debating waiting another day or two to see if it goes away...ugh I hate making these decisions.
well I really do need to go get my things done before the day gets away from me.
Thank you for all the encouragement you all give us,i don't get to respond to all things people write on facebook but I cant tell you how much it means to me and picks us up..so thank you.

Laying it down again and again

Mondays,how I love Mondays. They're fresh, they're the start of something new. Any new goals I make in life,i like to start on a Monday. This morning im feeling all that ,but im also feeling that this Monday means that next week is Matts surgery. This Monday also means that Hayden has a dr appointment this week and again after Matts surgery .But I will say that I am feeling a bit eager for her dr appointment tomorrow. Haydens incision from her 2nd surgery is healing up real nice however we have been noticing over the past week,another lump coming between the two incisions.This morning it seems like its starting to stick out more. Both of her other lumps started out like this,just a lump,after a few weeks they turned pinkish, then they would start to "peel" or look like wrinkly skin over top ,then they would burst.But there is a possibility of this being scar tissue or something...can you tell im tryin to be positive??:) Im hopeing the surgeon can tell us tomorrow if it is the infection acting up again. Im also wanting to know what he's thinking about surgery...yes, no, maybe. Its so hard for me to not know about that part.With Matt having surgery next week and then the possibility of Hayden having surgery soon after Matts...it seems so overwhelming,but maybe that's why God hasn't allowed the surgeon to know for sure about Haydens surgery, so that I don't get more overwhelmed.
Ive found myself a few times,looking over pictures of Hayden when she was starting to sit and crawl and I try to look at her neck, to see if there was a bump there then that I didn't see or even just see what it looked like to not have any marks there...its funny how I think of that stuff now.
 Our church service yesterday was just so good and so I felt so much peace being poured into my soul. They were talking about rough times in life and how even in those times God brings you to for a reason,he may be protecting you from something so much worse. I got to sing on the worship team at church yesterday and the one song I sang was "healer"...my voice shook so many times as tears kept wanting to fall..."I believe your my portion I believe you more then enough for me,Jesus your all I need" The pastor challenged us "how many of you really believe that"....and now this morning I have to remind myself of this again...I have asked so many times ,in a stressfull situation,how do you not be stressed? Everyday I lay all this down,but it seems though every day at some point I pick it all back up again.I have to be more aware, maybe I have to pray about it more...and then theres my husband, who takes everything in stride..i wish I was more like that. It was so good for me to talk to a friend at church yesterday who seemed to have gone through exactly what I am, laying it down, picking it up and then having a husband like mine who don't seem to understand that at all:) God gives me strength, when I ask...I just have to remember to ask and not try to do it on my own. And right now is a good time to start, I had my day planned out,tons of  wash , a house that is turned upside down, floors that need to be cleaned,and I thought I had the whole day to do it, but husband just called and said he got a bill for the surgery next week that I have to send in to our sharing plan ,I also need to call them and discuss how soon they can send us the check. I do all this at my in laws since they have  a fax machine...so my day just got turned around. When I remind myself that things like this are tests, it really helps me to handle it better:) so right now im choosing to not stress about the house or the wash and focus on doing what needs to be done right now. Something that is constantly on my mind this year has been "Gods already there" and this morning I read...
"O Lord,you have searched me and you know me. You know when I sit and when I rise, you perceive my thoughts from afar.You discern my going out and my lying down ,you are familiar with all my ways." Psalm 139:1-3
Praise you Jesus.
I also challenged myself this morning ,after hearing this said at church yesterday "If all you had today,was what you thanked God for this past week,what would you have?"
so my challenge is to be more grateful,for all I have. Whose joining me?:)

Sunflowers and rainy days

I don't even know where to start this post...the past week was a long one with many ups and downs.But we have felt so much love and support from our family and friends,its amazing really.
I don't feel like I have much to say right now but I wanted to give a bit of an update on Hayden..We started noticing over the weekend that between her 2 insisions on her neck ,its feeling thick again.. which in the past has not been a very good sign. This week is the first week in a while(other then when we were in pa)that I don't have any dr appointments for her and in a way I wish I did cause I would like for them to take a look at it and tell me what it means! We meet with the surgeon again next week,then the following week is Matts surgery and the week after that I meet with the ID doctor.The ID doctor is the one who makes the calls about surgery, antibiotics etc. so shes the one im eager to talk to ,however the surgeon will also give his opinion and if he thinks its looking bad he will call the ID doctor and let her know.The two of them usualy talk after the one sees Hayden.
When we started noticing the thickness around the insisions I feel like I immediately started worrying. something that is such a battle for me through all this. I wish I could say that I have mastered the one day at a time concept by now,but no, its still a struggle and today its been a hard one.I feel like I am constantly fighting a battle in my mind,theres the constant temptation to worry and stress and even fear...and as I told someone at church yesterday,i feel like I fail quite often.But oh how thankful I am for a forgiving Father who always has his arms wide open for me.And has given me a whole book full of promises.
On Friday I got a call from my sister in law and brother saying they were on their way to florida and happened to stop at our exit ,about 5 minutes later they pulled in. We quickly hugged, talked a bit hugged again and they left. It was soo good to see them but I just wanted to hug them and not let go.

                (my sister in law and long time friend,Ashley and my brother Allen whose 4 years older then me)
Saturday morning my husband told me there was a mouse our house,anyone that knows me knows that I am petrified of mice.I couldn't think of anything else on Saturday and wore boots the hole time I was in the house. I think this may have been Gods way of getting my mind on other things:) Sunday morning Asher brought the dead mouse still in the trap,in to me and I almost went through the roof screaming.He was quite confused but I was happy to put my boots away once Matt threw the grose little rodent out.We got a good laugh anyways since Matt had videoed Asher bringing it back to me and my reaction.:)
Church yesterday was again an emotional time for us. The support and love we feel from them is just incredible. It just feels like home.Thats the best way I can explain it. We had so much life spoken into us it would have been impossible to leave there feeling discouraged.
God continues to show us He is going to take care of us... It seems as though everytime something comes up or we start to wonder how were going to get through,we get a call,a text,a letter or something reminding us He's got us in His hands,Even though it can feel so overwhelming.
Its been rainy and dreary here since Friday night but im so thankful for my sweet friend who sent me the most beautiful sunflowers on Friday,they've been lighting up my whole house  and have brought me many smiles.
Thank you for your continued prayers, your support, the texts the calls all of it.We love you all.

"Be joyful always; pray continually; give thanks in all circumstances, for this is the will of God."1 Thesselonians 4:13
I have so much to be thankful for.I have so many reasons to be joyful. I must remind myself of that over and over.If your always looking for something to be thankful for, you wont think about the things you don't like in your life.
The meeting with Matts surgeon was yesterday morning. We had kind of a rough morning.I think all of this is taking a toll on our bodies and minds(mine especially)I felt exhausted and drained all day yesterday.Asher and Hayden both cried when we left them at grammas yesterday morning.(that never happens)We waited almost 2 hours before we saw the Dr.Talk about frustrating!!

 Dr Kana confirmed Matt does need to have surgery and he didn't want him to wait more then 2-3 months.We set it up for next Thursday(week from today.) The minute we left my mind started spinning " whose going to keep the kids the day of surgery,whose going to stay with Matt and Asher Tuesday during Haydens appointment, Matt wont be able to drive, im going to have to take him to rehab,what if that falls on the same day as Haydens dr app...." I text my mom and sisters and asked them to pray for clarity of mind as it was spinning thinking of all I had to line up and responsibilities id be having. I kept telling myself "one day at a time" and "fix your eyes on Jesus" We did decide to move the surgery to three weeks (august 7) since Matt and dad want to finish the one job there working at before Matt takes off for 3-4 months. That was one happy note,we were expecting 6 months of recovery and it sounds like hes thinking 3-4 months.not quite as bad:)
I finally went to bed at a decent time last night,I had a baby shower to go to and on the way there I had to drop off Haydens prescription to get filled,i then went to the the shower and on the way home I picked the prescription up.By the time I got home I could barely keep my eyes open I literally felt like I hadn't slept in days..although I have,but it don't help much when Ive been going to bed later then normal and my kids have been getting up earlier then normal. Momma got to remember to get her sleep:)
We have been so amazed already at the amount of support we feel.I really honestly didn't expect any of the things that people have been given us. Supper was delivered to our door again yesterday,although I saved it for tonight since I was gone last night. Sisters sent a picture of my freshly canned greenbeans awaiting me.. were just so grateful.
Hayden seems to be doing really well,other then getting up at a awful early time of the morning,crawling in bed with us ,in which we don't sleep to much since her feet or butt usualy ends up in one of our faces,this morning she was rubbing my ear in her sleep...might sooth her but certainly not me:)Shes her happy self and the wound has not been draining much as we expected it would even after the drain was out. But she loves not having her dressing on her neck. The doctor had said after surgery that she might have weakness in her left arm for a little while, from the nerve being stretched,well ptl we have not noticed any weakness and she seems to be using it as normal. It feels to me like the next week and  a half(until we see the dr again)We wont know a whole lot about her infection or whats going to be happening. We'll just keep her on her prescription ,speaking of , you know your a regular when all the pharmacists ask how Hayden is doing and ask all kinds of questions about her story:)
well I think blogging in the morning is not a good idea for me,running behind schedule and yet I feel like I could write more..but ill save it for another day.Thanks for following our story:)and for all the prayers and encouragement.We are so blessed.
Im so looking forward to getting my hair done. Having some relaxing time to myself.

Haydens dr appointment

There are so many things on my mind tonight...as there has been all day. Let me start with Haydens Dr. appointment. And all the little God kisses I got today.. My nearest and dearest friend from the south went with me and Hayden this morning, thanks to another near and dear friend who arranged it and babysat for the one who was going with:)We got there a little late but still had to wait in the waiting room , while we were waiting a women,her mom and her mentally disabled son came in,they sat across from us and the boy (12 years old)started yelling "read this to me Garret read this to me" and handed his grandma a barney book, she started reading and he got all excited as did I just watching him. I sat there smiling at him and and showing his mom ,who kept telling him to quite down, that I really did not mind at all. He then looked at me and said "Hi,read this to me,read this to me" I was so excited,i have always had such a soft spot in my heart for disabled kids and I love to interact with them. I jumped down off my chair,sat on the floor in front of him and started reading him the book in the most exciting way I could,he was so happy with me and we smiled at each other and talked about the barney book.He then told his grandma to move cause he wanted me to sit next to him although that didn't last to long:).Im sure all of you are wondering what this has to do with Haydens story, but this moment today,brought out a passion of mine and it brought such a joy to my soul.   That was the first moment in the past 2 days that I felt such happiness and I wasn't thinking about our situation at all.That boy blessed me so much,and he didn't even know it.That was my first God kiss:)
We finally went back to our room and Dr Abrams came in to get the drain out. They had to cut some of Haydens hair cause it had gotten stuck on the wound and it was to difficult to pull it out. I held Hayden tight and the nurse helped me with one arm and with the other helped Dr Abrams.

                                     (trying to calm her down when it was over)
After they were done Hayden wasn't calming down real much so Crystal took her and of course Hayden calmed right down. Dr Abrams said he was very pleased with how both the inscisions are looking. Although he said he hates that she will have these scars ..

He also said that they got the pathology report from the surgery and it looks like 90 percent of the infection is out. He was very happy about that and said that means that the antibiotics are working. I asked him is he still thinks we will have to have another surgery and he said possibly not,he said hes not as certain we will have to as he was in the hospital but still we just don't know. I also asked him when we would have it if we would and he said they would like to wait at least 3 months if they can.
Im really happy about what he said today , but this infection has taking us for ride after ride, it seems as though everytime we have thought it might be coming to an end, it suddenly takes another turn for worse. Next week we don't have any appointments then the next 2 weeks after that we have one scheduled each week. So for the next week we will continue with antibiotics and keep an eye on it to see if theres any changes.
Matts consultation with his surgeon is tomorrow morning. After that we have allot of things to decide and figure out, but we got a text this morning that had me sobbing in a coffee shop line. God is providing. And we are going to be taken care of. God showed me that over and over today... Supper being brought to our door, giftcards, a new pool for our kids, my sisters text and said there going to be doing some canning for me...i have cried so much today. and i have felt such a rest...last night i felt so confused, and all i could do was praise him..i kept saying that in my head "praise him in the storm" and today, God gave me strength again to praise him. Tonight i was taking the trash over to matts parents and i opened all the windows including the sunroof,i was driving over there with the music blaring and i was singing along "Your grace finds me..." and all of a sudden i noticed it was  raining, pretty hard, i had my whipers on and i kept looking at the passenger seat to see if i should close the windows and sunroof, but i didn't see any drops on the seat, the rain got harder, but still, no drops. It was a short rain but it was hard. I was in my car, rain all around, and not one drop touched me...and this song came to me..

"Many times I cry Jesus hear my plea
Precious Savior have mercy on me
Then my faith grows stronger and I understand
That nothing can touch me that doesn't pass through His hands

Nothing can touch me
Though life's billows may roll
Nothing can touch me
For He's still in control
Nothing can touch me unless He says it can
For Nothing can touch me that doesn't pass through His hand "
 pretty awesome moment for me right there.

I was also reminded today, someone always has it worse then i do, i saw on a friends page a little girl,looked like my son Ashers age, drowned and died today. Her mom wrote a heartbreaking post on her facebook page and i sat here in tears. Thank you Lord that i still have my husband and my children. Theres always a reason to praise. Our thoughts and prayers are with the Miller family.

Tomorrow is a new day... Gods already there.

Matts results

Today I have felt week...today was a hard day.
We got Matts results back...and its worse then we thought.I don't understand all the medical talk a whole lot but his infraspinatus(rotater cuff) is completely torn and 80% of the supraspinatus is torn as well.This is not good. Dr said he has to have surgery or he will have major neck and shoulder issues.The longer he waits to have the surgery the longer his recovery will be and the harder it will be for him to have his arm back to what it should be.
I don't know where this puts us,in a bad place ,really.Matt will probably have to be off work and his arm In a sling for 4-6 months.(or so we read online) My mind has been spinning since we found out, what are we going to do, how are we going to make it, what's our plan ,how soon is surgery...then it goes back to Hayden, what is she has surgery over the same time matt does, is this next surgery going to take care of everything for her...so many questions so many I don't knows...Talking to my dear friend tonight and she said something that i've been thinking all day and it just brought me to tears again..."God is good, no matter the circumstances, He is a good God" yes, i believe that. I will say it over and over even though none of this makes sense to me... Hes brought us here for a purpose, He will never leave our side.His mercy is new every morning. Matt and I talked about it over the supper table tonight and after discussing selling our house(something weve been thinking about doing anyways so we could buy a bigger house.) I said it again "God brought us here for a reason.." I will not stop praising.I will not stop trusting Him.No matter what my flesh may feel.We have allot of descisions to make over the next week... but I feel the only way I can hold it together is if I don't think past tomorrow....tomorrow we take Hayden to the dr to get the drain out and hopefully discuss whats next. Tomorrow I will call Mats surgeon and set up a consultation with him about surgery. Tomorrow looks overwhelming.
Ive been praying today that something will happen, that will show us that God really is going to take care of us. Tonight a good friend called and said if we need it,he thinks he could help us out till Matts back at work... that's the last thing we want to do, but to know we could have a back up plan brought me some kind of peace...its going to work out. We just have to keep our heads above the water.
So many people have commented and said how strong they think I am being,this took me totally off guard,i do not feel strong ...its a strength that is not my own.
 I also wanted to add, thank you to everyone who has messaged about things to try for Hayden. Before doing surgery we tried allot of natural things, but with the way this infection grows so fast, having the patience for natural things is hard and the longer we wait the worse it gets and is to take care of (as you could see in pictures) We do have Hayden on probiotics and I use essential oils on her daily(I forget some days). We got to a place after first surgery of just being sick of trying new things that weren't working and upsetting her more as she does not like anyone touching her neck.
I will hopefully update on Hayden sometime this week after the appointment tomorrow. Thank you for all the positive response we got on Haydens story on this blog. I did not expect that much response and cried at some of the messages ya'l wrote. Its been so amazing to see how many people care and are following her story. I think back to some of my old friends who I haven't seen in a while and still comment on my posts about her and I have thanked God again and again for all the people he brought into our lives over the years... we are so blessed to have sooo many friends and boy ,do I love you all so much:)
sleep well my friends.

Haydens journey pt 2

The day we got home, later that evening after I had given her her pain meds she spiked a fever,at one point that evening it had hit 103.4 .The dr had said if she gets a fever over 101 to bring her in.Oh what a touch decision we had to make especially since the hospital was an hour away.Thank goodness my mom was here  and together we quickly got her fever down.Somewhere through out the night her fever broke and by mid sunday morning her tempature was normal.
I cant remember when it was but over the next two week ,I think it was within the first week,her inscision split open.The dr said he wasn't surprised by this because of how the wound looked before he did surgery .He wasn't concerned about it.

Over the next week the results of tests started coming in.We were on a schedule of meeting with doctors in Greenville.The first week after surgery we met with the surgeon then the next week we met with the ID doctor and we kept doing that for the next month.The first thing we heard back was the Hayden had a secondary infection.MRSA Staph. That word scared me,but after asking questions ,the doctors told me its really not that bad and it is unavoidable.I know there were people a bit worried about if it was contagious  and that was something I asked the doctor ,if we should keep her away form other kids,but they said staph is everywhere,its at walmart and theres nothing you can do to avoid it.However he did say if we touched the wound directly or touch anything that comes out of it to immediately wash our hands.While we were in the hospital a sweet friend who I hadn't seen in years,her and her husband came in the night before surgery and brought us a huge bag of stuff.It was so thoughtful the things they had in,like a bag of quarters for vending machines and a journal to which she wrote that when her dad was in the hospital they would write down things the doctors said or funny things that happened while they were in.Well this was a perfect idea for me as I have such a hard time remembering what doctors say.So when the doctors came in and started telling us some results I wrote everything down,later I would go online and google what these things were.MRSA staph is a type of staph that is not treatable with certain antibiotics.So they did put her on an antibiotic called bactrum.
A few weeks later we got more results back saying that the first infection is what they expected it was,an atypical infection.I asked the id doctor where this came from and how she got it all she said was that it was something in the air that some kids just get.Not really avoidable but usually treatable with antibiotics however it does  happen that kids have to have surgery to take it out.Usually after surgery its gone.
2 weeks after surgery ,a Tuesday morning,Hayden started complaining about her owie hurting.I decided to give her some of the pain meds they had sent us home with.I put her down for a nap around 11 that morning since her appointment was at 2 meaning we had to leave at 1.I woke her at one and put her in her carseat hopeing shed go back to sleep.I noticed she was warm but thought it was just because of her jus waking up.When we got to the dr they took her tempature and she was a whopping 103.Dr LaCroix also noticed a rash all over her body and thought it was a reaction to the bactrum she was taking for staph.She told me to stop giving it to her but wanted me to take a stool sample of hers and take it to the nearest hospital to us so they could test it to be sure.I had asked her if she thought it would be ok for us to take a trip to PA for a week,she said as long as the rash goes away she thought it would be fine.The next day I ran her stool sample to st lukes hospital which is about 5 minutes from my house.I was rather un-impressed with how much they made me do before simply handing over the sample to the lab.It took a lot longer then I thought it would and I ended up being there for about 45 minutes just to drop something off!But that seems to be how everything is going with this,taking longer then we thought.:)We headed up to pa that Thursday and stayed for a week.Hayden did really well up there but it seemed as though every day that second node got bigger and started looking more and more like the first one did right before it burst open

We drove home the next Thursday and that Wednesday we had an appointment with the ID doctor,Dr LaCroix.I was eager to meet with her to see what she would say about the second node changing the way it did.But I did not expect what she was about to tell me.Our appointment was at 9:45 ,we got in there and Dr LaCroix and I talked about the node and I went on to tell her how much we love and appreciate her and all shes done for Hayden.Hayden is totally comfortable with Dr Lacroix and is always more then willing to let her give her a check up.

After I told her that the second node is looking exactly like the first on did right before it burst she said ,I think were going to have to do a second surgery.I wasn't to surprised to hear this but I just went on and asked "ok like how soon we talking?" she asked if I was free the rest of the day ,that she would call Dr Abrams and set up a pre op appointment yet that morning.I looked at her in shock,but said "ok." She went out and I called Matt right away.She came back in and said to head over to Dr Abrams office and theyl be expecting us.
 Dr Abrams wasn't in that day so I met with his PE.Hayden was not fond of seeing a "new" doctor and cried a bit when she came in to look at her. We talked a bit and she explained to me that once again,Dr Abrams was a little worried about another nerve being right around that area.This nerve would affect the movement of her left arm.In this case she would have a hard time lifting her arm.She said that theres also the possibility of the nerve being stretched during surgery but that would only be temporary weakness in her left arm.We then met with the nurse who schedules surgery and she said they set up surgery for the next morning at 9:15.Again I was shocked,i was expecting another week.We left for home after that.On the way home I called my mom and told her when surgery was going to be.She said that her and dad were going to start driving that evening and come down,they were planning to go to Indiana for the weekend and decided to change there plans and come down here to be with us and help us with the kids after surgery.I know any women who has a good relationship with there mom knows that theres no one like your mom to help you.Matt claims that anytime something has gone on with Hayden ,the minute I know my mom is coming,i calm right down.:)I asked him if that's a good thing he said "I guess,cause you calm down".Silly boy:).
At some point after I left the surgeons office I started praying.Crying out to God on behalf of my baby and I  heard his still small voice say "im already there,in that operating room tomorrow."This brought me so much comfort.And peace.Such peace
We got home that afternoon and I started packing my bags and Dr Lacroix and Dr Abrams were unsure of wether this would be outpatient or inpatient,although they were hopeing for outpatient.
Meanwhile ,somewhere between the first surgery and this point,Matt hurt his arm.Hes had problems with his shoulder popping in and out for as long as weve been together but something in the past month was giving him allot of pain and he had been unable to do allot of things he normally could with that arm.He went to the chiropractor twice in one week and after the second time the chiropractor said he thinks its his rotater cuff and he wanted him to get a mri done.I had scheduled his MRI for Friday(the day after surgery,but I scheduled this before we knew about surgery of course)
Wednesday night we had a cookout with Matts family.I am a people person,the best thing for me to do in the midst of something like this is to be with people I love, and I love my husbands family like my own.So that night was so good for me.Asher went home with Matts sister and spent the night with them.Thursday morning we got up at 6.As I was getting ready that morning I got this picture...Jesus ,in a white robe,walking around the operating room,picking up eery tool,checking it and then putting it back down...as though he was the one about to do the surgery.Again...such peace.
We headed down to GMH around 645.They put us in our room and soon after we got in Pat Overholt came in and hung out with us(the same Pat that was in with us for the first service.We really have the best friends.)We prayed together and then tried to keep Hayden from thinking about food or drinks:) A few doctors came in but not nearly as many as the first time an not nearly as many were checking the node.Finally the time came for her to go back.I held her as we walked back and when we got outside the operating room Matt asked to hold her,but Hayden wouldn't let him.I was so shocked by this.But as I was talking to Hayden and explaining to her that she was going to go in to see Dr Abrams she piped up and said "No .Stay Mommy" I remembered,a month ago we were here,and Matt held her,and Matt handed Hayden to the nurse ,And Hayden screamed.She remembered.Tears filled my eyes and I asked Matt "You held her last time didn't you?" he replied "oh,yea.She remembers doesn't she." There was nothing I could say to my little girl to make things better,nothing I could say to calm her.Cause fact of the matter was,in a few minutes ,once again,a stranger would take her into a room,lay her on a table and give her the anesthesia.I know that's a short time that all that happens,but im sure to her,it had to be the scariest thing ever.I hate to think about that.It breaks my heart.But everything about this has broken my heart.No parent wants to see there kids hurt,in any way,any form.We hurt when they hurt.....He hurts when we hurt.
The same things happened with this surgery as the first one,we stood outside the operating room with Hayden,nurses came and talked to us,had us sign some papers and eventually asked to take Hayden in.She clung to me for dear life and we had to pry her off of me to give her to the nurse.She took her in ,the doors closed, and again we were escorted out,all the while I heard my baby screaming.This walk was longer then the first one and it wasn't long before I covered my mouth and tears started rolling down my cheeks.I saw the door and wanted to run so I didn't have to hear her scream anymore.We got out to the waiting room and were soon joined by Pat and Matts sister Val who had a starbucks for me.We sat there and talked.This time it seemed to take allot longer then the first time before they called. My mind wanted to wonder so badly thinking "maybe that means something bad happened "but I kept reminding myself of the verse "taking every though captive" .I received so many texts that morning of people praying.And my facebook page kept notifying me of more people who were praying.I cant tell any of ya'll  how much that meant to me and what it did for me that morning.They finally called saying surgery started and that she was doing great.We sat there a little over an hour before they called us into the conference room.Dr Abrams walked in soon and said everything went perfect.The nerve was spared again but there was some stretching so she would have temporary weakness in her left arm.They got out a bun ch of little nodes this time and some more puss. He said again they had put a drain in and would take it out Tuesday when we meet him.I was feeling excited.Finally a light at the end of the tunnel.This was it right? But then he said something that took me a little off guard."I could see that theres moer infection growing where the first surgery was.Theres a muscle there and behind the muscle I could see more growing.So we will probably have to do one more surgery to get that our since antibiotics are not helping."Ugh.I didn't even want to think about what he just said I just wanted to get to Hayden.He said she was waking up as he was walking out to meet us and that we could go to her right after we were done talking.As soon as he walked outwe quickly got our stuff and started walking to the recovery room where she was.When we got to her a nurse was holding her and she was doing that breathing thing that kids do when they've been crying really hard.Apparently she had been awake a little while and they weren't able to calm her.Oh my heart...I wrapped her in my arms and she cried a little more. We sat there for a while and were told we could go home in the next half hour or so.I was so surprised by that,Hayden still wasn't "with it" yet we were allowed to take her home.

Right as the nurse said we could go home my mom text and said they had just pulled in the hospital.We met them in the parking lot.I looked at Matt and said "honestly i thought i was going to be leaving here today feeling like  ahhh,its done.Instead im leaving feeling like  ugh,its not".Dark cloud still there.Mom rode home with us and talked to Hayden on the way home.We got home and Hayden was pretty chill the rest of the day .

(she got whatever she wanted)

(Night after surgery,she slept in our room over the weekend and I loved watching her sleep.so peaceful.so close to me.)

(The drain that's in her inscision now)

(Mom changing the dressing,something we have to do 2-3 times a day)

 

Friday she was her happy self.She played with brother but every now and then,shed come in,sit down or sit on one of laps and relax a bit,then shed go back at it.Having mom and dad here was ...well I couldn't imagine it any other way.Mom helped me bath the kids and helped clean Haydens wound and change the dressing.Mom doing this seemed to help calm Hayden as well..something about her grandmas... and my kids LOVE both there grandmas and they can both do anything with the kids.
Friday Matt had his MRI and we are waiting for the results.Hopeing we get them tomorrow(Monday)and praying they will be good results!!
Mom and dad left this morning.We weren't planning on going to church as Hayden had a busy day yesterday since we went out for a while.But as mom and dad were getting ready to leave I looked at Matt and said "I think I want to go to church,all of us" so we quickly got ready and to my surprise,werent even late! When mom and dad were leaving though,Asher and Hayden both cried,allot.It was probably the worst goodbye my kids have had.Hayden tried crawling out of my arms to get to mom and cried "mimi mimi" the whole time while Asher just sobbed and said "don't go mimi don't go!" .Like I said,my kids love there grandparents.And its no wonder the way mom and dad(mine and matts) interact with them! Even after mom and dad left,Asher stood in the living room with Matts arms around him,and just cried.

As we pulled into church,i looked at Matt and said "im feeling sad" He asked if I want to go home and I said "no but maybe you should go before me and tell everyone,no tight hugs":) Singing no more then started and I was sobbing.This is how ive been with all this.During everything,surgery dr visits,all that,im strong,i don't cry a whole lot,but once its over,im an emotional mess. But church was what I needed.My other family.Who all showed they cared in one way or another. During worship they sang and encouraged us to walk around and bless someone. I was blessed.God has again and again showed himself faithful in all this.Again and again He has showed me Hes here.Ive questioned and everytime I do he sends me to my knees and reminds me of His love for me.Of His faithfulness,of His goodness. Of that,i do not question.I feel my faith being taken to a whole new level through all this,and you know what. That is something I have asked of God for the past year. I got chills as I just now remembered praying that months ago "Lord,take me deeper"
Ive been wanting to get my hair done for the past 2 months.I even at one point had the text wrote out to a girl in my church who does hair,but then I got a call about another dr appointment and told myself ,I just cant right now.All you women who get your hair done know how agrivating it is when you see your highlights growing out:)I just told Matt yesterday that I really just want to get my hair done,not think about it and just get it done...but I cant not think about it. Ill think about it ,then I wont do it.Today in church,that same girl who does hair came up to me and hugged me saying shes praying for me and just wanted to bless me.She told me to come into the studio this next week and get my hair done.To have a relaxing time and enjoy getting pampered. I literally started sobbing. As she walked away I just stood the crying and smiling.God cares.It sounds silly,but he knew what I wanted and he made it happen.
That leads us to right now,11:15 on a sunday night.Way past my bedtime I might add,but once I start typing I cant stop,obviously by the length of this post.BTW ,if your still reading,thanks for sticking with me.Also please excuse  all the miss spellings and half spellings:) I hate to re-read.Hopefully you can make sence out of this all:)
Tomorow we will hopefully get Matts results back and Tuesday I meet with the surgeon to discuss whats next,i guess. Thank you for the continual prayers.Honestly there are so many times I feel so undeserving as I know there are so many kids with worse diseases, life threatening diseases, yet still this is our journey, what God has us walking through and your prayers are so much appreciated.
Music is a passion of mine, even as I have written this,ive had my earphones in and am listening to praise and worship music.It soothes me, It moves me, Its how I worship.. tonight I seen this on a friends page and decided this is my song for the next week. Whatever it brings...
You stay the same through the ages
Your love never changes
There may be pain in the night
But Joy comes in the morning
And when the oceans rage
I don't have to be afraid
Because I know that you love me and your love never fails........Thank you Jesus!!!!

 

Haydens Journey pt 1

So i have finally decided to start a blog...I don't know how well ill do with it,if it will continue once Hayden is back to full health ,or if I will even update it much,but I love to write,and I want to document everything that is happening in out lives this year with Hayden..so I am going to start by writing the full story thus far....WARNING:there are pictures of open wounds in this post,if you have a weak stomach you may not want to read no further.
It started back in march.Hayden who was then 18 months old came down with a  bad cold.I didn't think much of it the first few days,she was extra fussy had a runny nose but that was mostly it.finaly after about 3 days I thought "what if she has an ear infection..im going to take her to the peds just to be sure" so I made an app. and we went in.when the pediatrican saw her she checked her ears,nothing.She did say that Hayden has a pretty bad respitory virus,she then felt around her face and ears and said "oh she has a pretty swollen lymph node to" I had no idea what this meant but she made it seem like it wasn't a big deal but that we will put her on antibiotics and she wanted to see her again the next week.Over the weekend the lymph node got bigger.When we went to see her again the next week she seemed very concerned about her lymph node being bigger .Again we put her on more antibiotics and went home,that was on a Friday and the peds asked for my number and said she will be calling me over the weekend to see if it changes at all.She called Saturday and I said we weren't seeing any change she then again wanted us to come in the next week but she was going to be on vacation so she wanted us to see another peds. So we went in again ,and after us having talked to some people and showing some pictures of how it looked

(First picture I took of the lymph node)

 we decided to ask to get some tests done to be sure it wasn't something other then an infected lymph node.The peds assured us it wasn't but set us up with the hospital in Asheville so we could be sure.That was a Friday as well so I went home,packed out bags,dropped Asher off at Matts sisters house and we headed to missions hospital.They were expecting us so they sent us to a room right away and the doctors started rolling in. Feeling her lymph node putting her IV in (which was a huge crying deal) and later that evening they started doing some tests.We had blood work done,cat scans and a needle biopsy done over the next two days. She had to be sedated for two of those things.

 

(Her first time being sedated)

(Right before they sedated her the second time)

Sunday afternoon they sent us home with most of the results (all but the needle biopsy,which was what would tell us for sure whether or not this was a tumor)They also put her on more antibiotics.That Thursday the kids and I went to PA still with no results.I was so nervous and praying harder then I ever did that everything would come back negative.A few days after we were up there they called and said it was negative.Thank the Lord! I honestly thought,once we got the results back for this that now she would start getting better and this would go away.Never did I imagine 4 months later we would still be dealing with it in an even worse way then it was then.After we got back ,we met with the surgeon who did the needle biopsy who was a ear neck and throat dr in Asheville.When we met we him he said he was positive this was just an atypical infection that would run its course,worst case scenario we would have to go in and drain it.He took her off antibiotics just because they were not helping,we went to see him about 4 times over the next couple weeks.finally beginning of may he said were going to have to do surgery and soon before it bursts and starts to ooze,i told him I wanted to talk to my husband and then wel call in and get it scheduled.When I called in on Monday morning they said they could get us in for another three weeks.i was shocked by this but was like ok ,well wait till then.The week before surgery,the lymph node burst and it did not look pretty!

 

 

 

(one of the stages it went through right before it burst)

(the beginning of it bursting)

 

I called in and told the office I wanted him to see it before he did surgery,to know if this is normal,if he can still do surgery and what was really going on here.We met with him a few days later and he said he could not perform surgery with it looking like this and said he wanted to see us in a month. To say I as upset is kind of an understatement. But I didn't know what else to do really. That was on a Friday too. I sent some pictures of the node to my sisters and mom over the weekend

                  (this was the picture I sent to Gary Tuesday that we went to the hospital)
(note:we did not think much about the second lump on this picture,just thought it was all apart of the first one we were seeing)
My oldest sister called me Tuesday and told me I need to text the pictures to my cousin Gary who is a DR.  I sent them to him right away and within a few minutes I heard back from him.He said he had no idea what our dr was thinking but that we needed to get a second opinion right away(which I had already set up and app with a head neck and ear dr in Spartanburg on Thursday of that week) I told him about my app. I had made for later that week and he said that everyone he talked to about it including there pediatrician and surgeon at the hospital there in Georgia all said that it did not look good and we needed to do something right away.Gary was amazing. He told us exactly what to do and say and even recommended us to go to Greenville health system (Greenville memorial hospital) sinec this was a teaching hospital and had more modern medicine. He told us we needed to take her to the ER that day and not to wait.The reason for taking her to the ER was so tht we could have access to all the doctors,not just one,that way they could together figure out what this was and how to treat it. So I called Matt at work and told him what Gary had said,we discussed it and were both so not wanting to go to a hospital again but fully trusted Garys judgment and advice in all this so that's what we did.I packed my bags cause neither of us knew how long we'd be in . We got in and within an hour we were meeting a surgeon. Dr Abrams came in (who everyone said is the best around.comforting and ll a part of Gods plan we believed)he took a look at it and said surgery would most likely be happening but that there wasn't much emergically they could do but they would admit us and we would meet with an infectious disease doctor and see what they could do.All the while I was texting my dear amazing cousin Gary asking him questions,telling him what the doctor said,and he would quickly text back and say things like "this is what I was hopeing would happen." which made us feel so at ease.They admitted us and the rest of the day we met with so many doctors and residents.All who would come in and want to look at it and feel around it.Finally we met with Dr lacroix(the infectious disease doctor) .Sweetest most helpful down to earth lady who helped us understand all this the best we could.She told us a few things (honestly I don't remember what all she said the first time she came in)but she did say she wanted to talk to Dr Abrams and would be back in later to discuss what they want to do .Dr Abrams came in soon again and explained to us that surgery was not what he wanted to do cause he was worried about facial nerve which he thought was very close the node.If he hit the facial nerve she would have no movement in the left side of her face.He explained that he was very uncomfortable with doing surgery but would do it if he had to and that was up to Dr Lacroix. She came in soon after and said they needed to do surgery. I asked her why Dr Abrams was so concerned and she said " He believes that the node is either directly on or possibly even entwined around the facial nerve.He said if he has to go directly in through the node he feels he has a 70-20 percent chance of sparing the nerve(20 percent chance he could spare it) but if he went in kind of behind it he felt he had a 50 50 chance of sparing it.So she said she felt that would be fine.She said they will be doing surgery on Thursday and we would stay in there till after the surgery. We talked more about the surgery and at one point I told her while talking about Dr Abrams sparing the nerve  that I was a praying women and I had allot of people praying with me that the nerve would be spared.She then said "honey"(in her sweet southern accent)"im a huge praying women,A HUGE praying women.And that is the best medicine we can have..all this other stuff is things hes given us but prayer is still the #1 thing" that was such an awesome moment for me.

(Hayden and Matt at Greenville memorial hospital the first day we were in)

The next day (wedneday)not a whole lot went on other then more doctors coming in to see her and then them explaining to us about surgery .Wednesday could have been a worry filled day for me.Matt went to work since it seemed pointless for us to both be in there and knowing Thursday he would be taking off for the surgery.But my sweet sister in law came in and spent the day with us.And honestly I didn't think a whole lot about what was about to happen and the risks of it all.Valerie left around 2 and around 4 Asher and matts mom came in.Around 6 Matt and his and his dad came in and soon after that our dear neighbors came in .We all went down to the food court and ate supper together.When we were getting ready to go back up to the room ,I happen to notice a flyer on a table of a lady who had facial paralysis.(what would have happened to Hayden had the nerve been hit at all).I stood still,my eyes started filling with tears,but just like that,i shook my head,said a prayer and moved on.That was honestly the only time throughtout that whole day that I felt a bit of worry,i know the only reason for the peace I felt was because of the prayers that were being said on our behalf.

(Hayden eating breakfast Wednesday morning)

(Hayden would not leave me out of her sight.But when Valerie came in,she was fine with me not being right there.)

Matt and I both slept in the hospital Wednesday night since we had to get up early for surgery the next morning and we live about an hour from the hospital.I woke up early that morning,before Matt and Hayden,and I started readin my bible.I read out of Isaiih 49 and I started writing a letter for my baby girl

"Before you were born He called you"

"He held you in the shadow of His wings"

"You are honored in the eyes of the Lord and He will be your strength"

"He will make you a light"

"In the time of His favor He will answer us"

"He will keep you and make you"

"Shout for JOY,Rejoice,Burst into song.He will comfort you!"

It was such a beautiful moment.any comfort I needed was right there.You see,before Hayden and Asher were each born,i woke up in the middle of the night,and heard from God

Before Asher was born I heard "He will be a blessed child"and before Hayden was born I heard"I have a mission for her"

"before you were born He called you"!!!! I had chills that morning.And felt total peace. Pat Overholt,one of the pastors at our church came in early that morning and sat with us,prayed with us and helped us not to think about everything too much:) They came in and said they were ready for her.I sat in her bed with her as they rolled us back to the pre op room until we had to get our gowns on.

Matt carried her the rest of the way.We waited outside the operating room until Dr Abrams came to talk to us .He told us he was up for 3 hours the night before,trying to come up with a  plan as to how he can do this surgery succesfuly.He said he thinks he came up with a  pretty good one.Matt handed Hayden to the nurse and she took her in  while another lady escorted us out to the waiting room,the entire walk out of there I could hear Hayden screaming.I cried as we walked out(yes im crying now as I type this)We got out to the waiting room and matts mom and my mom(who had drove all night so she could be here for surgery) had just gotten there.We wanted to go get something to eat but we were no longer down there when the lady at the desk called me and said they had called from the operating room saying they started surgery.I decdided to skip eating and go back up cause I didn't want to miss anymore calls(they do a wonderful job of keeping us informed as to whats going on in the operating room)so mom and I went back up and waited...

We got the call that surgery was over and Dr Abrams wanted to meet with us  in a conference room,which honestly freaked me out a bit cause there was a room full of people waiting for surgerys to be over and a few doctors had came out and talked to people about surgery,but I did not see one person go back to a conference room!We got back there and waited for the dr to come,I seen him coming in the hall way and I was trying to read his face,but just couldn't tell until he got in the room, and then I seen his smile as he said "It went great,the nerve was actually in front of the node and we had it in sight the whole time.We got 3 cc's of puss out of it and the node was the size of a gulfball,I never seen anything like it"He also told us that the one behind it(the second lump) was infected as well but was attached to the first one.He mentioned doing another surgery but said it wouldn't be for a while an hopefuly we can wait to do it until he can do a 2 in 1 surgery and fix up the scaring of the first one at the sametime as removing the second one. I could not stop smiling ,I quickly posted on facebook since I knew there were so many people who were wondering and praying all morning "surgery was a success!!!"15 minutes later we went back to see her.Mom warned me before hand that she might be hooked up to tubes and to prepare myself for how she might look...but I thought she looked like an angel.

                    (My little trooper .I made my bed beside her until she woke up)
We had to stay in another 2 days after surgery just to make sure she would take her meds orally and to take care of the drain they had to put in to try to get more "stuff" out.

the rest of the day Hayden was really loopy and tired but she was the sweetest thing and we all enjoyed snuggling her and loving on her.

Friday we spent the day laying around.Mom and Asher came in for the day and we just relaxed and enjoyed the game room at the hospital

(Asher loved the hospital and was eager to come back Saturday morning)

(Hayden skyping my sister Karen)

(Doing Haydens nails)

(He smile is even brighter then before)

(she didn't sleep much Friday cause asher was in and she wouldn't take her eyes off him)

(tryin to show asher where he could sleep for naps in the hospital)

 

(one of my favorite parts,mom matt and our 2 kids all crammed in one room for naps,just being together)

finally Saturday they took Haydens drain out ,and in a matter of one day,she went from puking up her antibiotics to taking it without crying a bit(that was prayers too!!)so the they said we could go home.

(Hayden sleeping in her bed right after we got home)

(about a week after surgery.)

We got home with doctor appointments set up once a week for the next month, and here again I really thought this was the beginning of the end...little did I know:/

 

to be continued:)