lovemyrocko

Hope we can help...

2010-10-12T04:35:00.000-07:00

I sit hear very early in the morning trying to update so that I can share this blog with another family that is walking in the same shoes I am. I just happen to be a little further in the process and hope that our experience can help another family during a difficult time if only to say "Someone else is walking this too and we hope we can help in some small way"... If you would like read the 2010 posts and it just shares my feelings from my Facebook Notes that I used to keep friends and family up to date. Blessings...

THIS CALLS FOR CAKE AND ICE CREAM!!!

2010-10-12T04:34:00.000-07:00

Raegan's EEG was 100% NORMAL!!!! Sunday morning will be her LAST ACTH shot!!!

I would be lying if I said I walked into that EEG with all the confidence in the world, all the Faith of a thousand angels or even the Faith of a mustard seed. I woke up this morning just begging God to please let my baby girl be healed. To let this nightmare come to an end. As she layed there getting hooked up I just kept wondering will it really be clear...? When the dr opened the door and gave me a HUGE thumbs up and said it was 100% normal I think I just sat on that floor stunned. I said wow it has been a long two and a half months. His response was this: "Yes. This one was very very hard. Very difficult. But just think if you had let it go you would have lost her" (Developmentally) That statement brings alll of this journey into perspective. We don't get to choose the path or the outcome. The sea of emotions that I have felt over this last two and a half months can not even begin to be put into words. Fear, worry, anxiety, worthlessness, helplessness, exhaustion, failure...all have taken their ugly place at some point or another. Let me tell you it has been the support of family and friends that have brought in hope, joy, faithfulness, expectation, comfort, rest, peace. Only today after hearing the doctors words do I feel like I can take that deep breath. Yes there are still details to contend with but the hurdles that have been gone over, they are behind us.

I would like to share though an experience that happened as the doctor came in and said "100%" normal. I felt the Presence of God surround me like a bubble but almost like He was standing right there and just faintly seemed to hear in a chuckle "Told ya so" not in a condisending way in the Fatherly I am right here for you always have been always will be. I have reflected many times today on that and just have to say "Thank you Dad" It is usually in the times of our trials that we can't see beyond the circumstance or find it hard to trust. If your controlling like me then you just struggle not being able to have all the answers. I am so grateful that I serve a God that does love me and even in the season of just barely hanging on to Him, He has held tight to me. The nights that I could only whisper Please heal Raegan before crashing to sleep He heard every part of my breaking troubled heart.

So where to from here...

We will go back to the dr on the 26th to see how Raegan is doing being off of the shots and just on her Sabril oral medication. About a week or two after that we will do the long term EEG in the hospital to see what path we take to wean her off of the Sabril. If everything continues as it should then within the month we should be drug free! Hopefully within the next month we can have visitors and start having a few play dates as Raegan hasn't gotten to play with any of her friends so her choice of playmate is torturing Carley and stealing her pacifier :)

As always THANK YOU to each of you that have prayed. THANK YOU to anyone who just listened whether it was through a phone call or me babbling in these written notes. Our God is Awesome and He really does have things under control!

Blessings!

Oh and if there was a word to describe my feelings today it was best written by Beckie:

!!!!!!!!!! SUPERCALIFRAGILISTICEXPIALIDOCIOUS !!!!!!!!!!!

Thanks Beckie! :)

Life is a journey...

2010-10-12T04:33:00.000-07:00

So it seems like lots has happened since I last wrote but as I sit down to write there isn't alot of new events but the events that have taken place are surreal.

Yesterday marked the beginning of the end for Raegan's shots. This coming Sunday should be her last one. YEAH!!! We have to go Thursday afternoon for another short EEG at the doctors office. As long as this one is clear again we are done with shots! What a trooper she has been! The process after that is she will remain on her Sabril and we will have to do another long EEG. That will require another hospitialization but it is the best way to get the overall picture and will help the dr decide the course of weaning her off of it.

Let me just say that when you are in the midst of the storm it is so hard to look past the turmoil you feel that you are in. I was so distraught over the fact that during the course of the intial shot phase we seemed to have "lost" our little girl. She did not smile, laugh or really engage in much. She walked around grunting and moaning and slept ALOT. Over the last two weeks as we have begun the weaning process we have seen our little girl return to us. This last weekend had to be the most precious weekend since we began this journey. Daddy got to come home Friday night and boy was he greeted with a great big smile and two little arms thrown up to picked up. It really made his week! I told him I think having him home really perked her up. She was NON STOP all weekend. She ran and ran, laughed and laughed. She sat at her book box for the longest time and I can't tell you how many times we read the bubble book let's just say I could type it word for word and not have to go and get it to check! Daddy even taught her how to make a basket in her basketball hoop that she got for her birthday. Boy was he proud!!! Not only all of that as if we (I) didn't have enough going on we added another addition to the family. We have Batteries the dog and we just added Charger the puppy. Get it...Batteries and Charger. (I know I'm lame)!

So now we venture into another week of God's plans because if it's one thing I am learning it's His plans not mine, His timing too. Please be praying for another clear EEG and also against infection. Raegan does have a small boil/staph thing and her dr wanted her started on antibiotics ASAP since she doesn't have the immune system to fight infections well. All in all we are well. Oh and Miss Carley is amazing she has managed to roll herself to her side at night and is giving us the biggest smiles. Love it! Blessings to you all!

Words can not describe...

2010-10-12T04:32:00.000-07:00

the shock and elation I felt when we finished our EEG and the doctor walked in with the exact words, "There was not even one blip on her EEG" My mouth hit the floor and I said "Your kidding, really?" He said this is very good news. Well yeah! Needless to say it was all I had not to jump up and dance for joy right there. But before we got to far into it he said, "Now don't celebrate to much, just a mini celebration". Wow way to shoot me down...well he wasn't trying to be a downer he was just making sure we hadn't gotten the wrong idea. Even though the EEG was clear we still have a road ahead of us. But he did say "Now we don't have to do the Depakote which is a good thing" NO KIDDING! I was so over the top stressed about that possibility. So where to from here:

Now we continue to decrease her ACTH shot over the next three weeks. The goal here is to make sure that the Infantile Spasms are truly gone. You can't cold turkey stop any of these seizure medications as it could actully cause fatal seizures, so the weaning process in itself will take time. Raegan is also still on Sabril and the plan for that was to continue it for a total of 6 months. I think as soon as she is off the shots we will make sure that she doesn't have any episodes and then begin to wean off of that as well. During the course of all of this we will continue to do EEG's and even do another MRI and continual lab work. Another major concern of his is her immune system. When he finished with us in the exam room he said,"Now run out of here" I asked about her next appt and he said to schedule it for Monday. So we stop at the desk which is in back and not even out in the lobby and his wife was walking by and saw Raegan and headed to her saying" Oh my gosh she is so cute" the dr literally snapped at her "Don't touch and hug her" and then looked at me and said, "I don't want anyone hugging and kissing on her" YIKES, sorry...so I guess I need to be VERY diligent on keeping the germies away from her. Bummer for us because I was just letting people visit with no kids and scrub up guess I'll have to rethink that!

Needless to say I was VERY humbled by today's events. Learning to trust and relax in HIM is very hard when the circumstances seem so overwhelming. He really does care and does have it all under control. George was beyond estatic and said he was going to grab the closest guy to him and give them a hug...hope they understand! :) I do have to say two cool things happened in this as well...one for the first time in MONTHS I felt joy. I couldn't even cry I was just too elated if that makes sense and just wanted to go into the middle of the street and shout for joy. God is SOOOOO good. The other thing that was cool to me is that even though Raegan's dr is a rather serious down to business man you could see his pleasure as he talked us through all of the events he said several times this is very good news and as he walked out of the room ahead of us he either said "Sweet Jesus" or "Thank you Jesus" either way I thought yeah..."Thank you Jesus"

Please continue to pray for complete healing and that as we continue the weaning process we do not see any episodes. Thank you again for all of the support. We love you all!

My head may explode...

2010-10-12T04:31:00.000-07:00

Apologies up front because I hope not to be redundant but have found this writing to be a stress relief. Even if it is just rambling to you.

So we are going in tomorrow for another EEG. Feels like a double edge sword. One have the Infantile Spasms stopped and Two are we looking at a different seizure disorder? I can only hear the dr words over and over...I want to get her off the ACTH (the shot) and on to Depakote right away...over and over I hear it. With SO many questions. We'll get the answered for the most part at the appt but it is maddening. The more I research the medicine the sicker I get. I know "Annette stay off the internet", well if it was you you'd be right there trying to figure out every last detail before agreeing to give this medicine to your child. I had the most heartbreaking conversation with George this morning...

5:30am- George says: You know the picture on the fridge of Raegan at her first birthday. I say Yeah. He says well it is burned in front of me. All I see is that picture. All I see is our happy little girl. I just want her to be ok. I say: Honey I realize that but with this medication we may never get to have that little girl back. We have to deal with what is at hand and how these medications will affect her. And he says: yeah but we only got that little girl for 14 months, we didn't even get to know who she really was/is or would be... Needless to say I cried...

The reason that is so heartbreaking isn't because I'm trying to be pessimistic it is from all the research I am doing and the actual patient reviews not just the pharmacy warnings. I was so looking forward to being done with these shots and Sabril so that we could get our little girl back. All the parents that I have talked to that have done the shots have had the same mood changes we are seeing but they went away after the shots were stopped and their kids were "back to normal". That is what had been getting me through this. It has helped me look past the "dead" look in her eyes, the lack of laughter, the lack of any zest I have just kept plugging along knowing this would come to an end and we could have Raegan back. All that to say that now he wants to put her on a medication that causes severe mood/behavior changes and depression. In talking with our cousin who has been down this road her daughter stopped her shots at 9 months and didn't have a seizure for 10 years. Had her first reoccurance and had to be put on a medicine very similar to what our dr is recommending. Yesterday her exact words were "I am not going to lie it sucks. She has now been on the meds for three years and she has never been the same. I just wish I had my daughter back"

I don't know what this road holds or why we are on it and I am not going to question it I suppose. What really is the definition of normal anyway right? I surely don't fit into normal. I guess just wanting your child to be everything that they can be down the road of least resistance. No pain, No obstacles. Fairytale land I guess. All the little cliques are screaming at me now...what doesn't kill you only makes you stronger, you'll never be given more than you can handle. I know these are true but it sure doesn't make it any easier. I feel so old...like I have aged 10 years in the last 6 weeks. I am being asked to not only step outside of myself but to just step out of the way.

Please pray for us. Pray for George he was so broken this morning. He said he's just having a really hard time dealing with and accepting this right now. I know honey...me too.

Life according to Raegan...BLAH!

2010-10-12T04:30:00.002-07:00

I would whole heartedly agree with you sister! It has been a week since the last update and what a week it has been! Monday did start with us "going it alone" since daddy had to head back to work. My cousin came over in the morning to hold for the shot and Taryn came at night to hold. Let's just say by the end of the week Raegan caught on that when those two showed up it meant something because she would start to whine. I have to give it to her though she is one tough cookie! She has taken her shots like a real champ way better than her sissy mama would ever do! She is so sweet too after each one she just wanted mommy to hold her and get her her sticker. The week hasn't been without it's heartbreak though (from a momma's perspective) the side effects they warn of slowly began to surface. The first one has been the weight gain. I have not actually weighed her but boy is she heavier. But you can tell just by looking at her. Her little cheeks are very full and as the doctor put it she will have a "moon face". Her little belly is looking very distended. None of her pj tops fit right and I am sure we could make some type of beer belly commercial. :( Joking aside her poor little belly button is an outie when it should be an inie! When they say steriods make you hungry they aren't kidding! The girl eats, eats, eats! It's hard to make sure it's all balanced. Although I am sure the amount of bananas and cheese she has eaten is what has help stave off the severe diahrea they said she would have that we haven't seen yet. Thank God! She also is whiny in a grunting sort of way. You'd have to hear it but it is all the time. Poor thing just doesn't know what she wants. She seems restless and over the past few days doesn't play much with her toys either. She's up for an hour then sleeps for an hour or two. That cycle repeats itself all day long. At night she is only sleeping in bits. She wakes up talking to herself and grumbling. She doesn't get up out of ther crib just lays there for an hour or so and goes back to sleep.

So on to the not so good news. We went for our weekly follow up. Again glad she has not shown any outward jerking signs of seizures however in discussing her night time/sleeping patterns we discussed Absent Seizures. He feels that in looking at her last EEG at the hospital that she is having these. What does this mean??? Here's my rant...I DON"T KNOW! I know what an Absent Seizure is but how does it now relate to her? He wants me to immediately taper her shots down sooner to get her off the ACTH and put her on Depokote with the Sabril. Well, does this mean the Infantile Spasms are gone and now we are dealing with a different seizure disorder? I know I need to ask all of these questions to him but when you are in the office it all seems like ok let's go this way but then you get in your car and start an hour ride home and every scenerio and question comes flying at you, you just feel like pulling over and throwing up!

We are scheduled for another EEG on Thursday at his office. Pending those results will dictate what to do with the medicine. Seriously I need some DIVINE INTERVENTION here! We are not talking a cold or the flu here we are talking LIFE ALTERING decisions. The decisions made TODAY WILL AFFECT HER FUTURE whether that be for the good or not so good. Let me tell you that is one hell of a spot to be in as a parent. Weighing risk and benefit is so unnerving! I NEVER imagined we would be making such gut wretching decisions. I know we are not the first or the last to go through this but it is the first and pray to God the last time I will ever have to be in this situation. As a dear friend said "God knew you and George were the right parents for Raegan and Carley" I have to trust that and that He will give us the wisdom through all of this that He knew we would be here and how it turns out...

On to the happier of notes...Miss Carley is doing wonderfully! She is such a cutie and just can't help but make you smile. She has the two most precious olive round eyes and they are getting very curious now a days. She has even slept in her crib the last four nights all night without sneaking into mommy's bed! I put her down wide awake between 8-8:30 she falls asleep on her own, she wakes at 12:00ish and 4:00ish to nurse. Other than that momma gets some sleep. (That's if she stays off Facebook) :)

I can not thank you all enough for the friendship and support! Honestly I am asked all the time "What can I do for you" right now that answer is... Just listen. Just talk. Just laugh. Just cry. Just be there as a friend. Dinners come and go but the ear and emotion of a friend carries on when the times feel their darkest.

All of our love and blessings

What a week and a half

2010-10-12T04:30:00.001-07:00

Well I didn't make it to Days 3-7 updates so I'll just put it all in a shell here!

We had Raegan's first EEG since starting the ACTH shots last Monday. The doctor says that is still showed bursts of seizure activity but he was very happy that we had not physically seen a seizure since the night before. We got to come home on Friday afternoon. Let me tell you I have never been so excited to leave somewhere. Sweet Miss Raegan even waved bye bye to the empty room. Go girl! So Friday night was my first time having to give her the shot all by myself without a nurse there to walk me through it. Taryn was the "holder" and George watched so he would know how to hold her for the weekend. The reason this was even more nerve wracking was that instead of getting it in a nice pre filled syringe I had to do the whole thing from scratch. Assemble the needle, sterilize the medicine vial, and draw the medicine. The thought that I was responsible for making the right dosage is what had me freaked out. Now that we are days into it I feel alot better about doing it. Let me tell you Raegan is ONE TOUGH COOKIE!!! She is taking these shots like a champ! Of course she cries during the shot but no joke as soon as it is over and I pick her up she stops crying. I made a sticker board and she puts a sticker on it everytime she gets a shot. She seems to like that.

So we went for our first follow up appt this morning and had a decent visit. What we are most excited about at this point is we have not seen a single seizure SINCE LAST WEDNESDAY NIGHT!!!! YAY GOD! It has been very tough to watch her walk around the house like a little zombie or only be awake for 3-4 hours a day but right now we are seeing progress to these stopping! We have to go every Monday morning for a follow up. She is his first patient of the day since her immune system is comprimised he wants to get her in and out. He also writes a lab order and today we stopped on our way home just to get it out of the way. I called the lab and explained the situation to them so I went in registered her and waited for them to call her name while Mayra waited in the car with the girls. As soon as they called her we were in and out so there is less exposure there. It is very scary to think that even the slightest bug could be life threatning to her. He will continue on the Sabril as well and he expects she'll be on that for at least 6 months but at least that's not a shot! I was SO excited that he said I can take her for walks in the neighboorhood. Hello sunshine and fresh air!

I can't even put into words what the hardest part is or the biggest lessons are. However the one that jumps at me today is to live only in the moment quit being so hyper scheduled. God is helping/dealing with me on that. I have no control in that area and that's ok. Being stuck in the house is tough but George and I talked and Sunday mornings may become my outing day. Take Carley to church and do the grocery shopping. Not a whole lot but I'll get out.

Thank you to everyone for all the prayers and support. Areas of prayer right now are the continued progress of Raegan's seizsures to stop, against any illness/infection. Peace and sanity for both George and I. Also, for George to find an apartment ASAP while he works out of town. The long days and living out of a suitcase are very hard on him on top of being away from home. At least he could have his own bed, a kitchen and a shower. Hotels are just the pits along with fast food everyday! Other than that we are doing good considering.

Many blessings to you all!

Day 2 Events

2010-10-12T04:28:00.000-07:00

So as I posted yesterday today was D day for me to give Raegan her shot. After very little sleep the night before I think 3ish hours I had that fun task to look forward to. They say it will get easier with time but I guess time will only tell. I had myself her nurse and a student nurse in here for the event. The student nurse holding Raegan in her lap and her nurse holding her leg. Honestly before the moment arrived I really did not think I could do it as in getting my mind over the fact that I was about to jab a very sharp object into her leg. Well, the jabbing wasn't the hard part so to speak I found out that it is having to pull the plunger of the syringe up to make sure you didn't hit a vein while keeping the needle in her leg. I found out the hard way and didn't have enough counter pressure and actually pulled the needle out of her leg before I even had a chance to get any meds in. I immediately burst into tears at the realization that I now have to re jab her and now have to do it through a screen of tears as the nurse is telling me to just stick her in the same spot again. I froze and she actually had to count to three for me to do it again. We got it and bless poor little Raegans heart she is so forgiving immediately just wanted momma to hold and comfort her even though I was the one that just caused her pain. Only a momma's touch as George would say. Tonights shot went rather well and I guess I can see where they say it will get easier maybe not the fact of having to stick her but better at the shot itself and it going smoother.

Her dr came in tonight and we had originally thought she would get an EEG on Wed to see how she is responding. However she has had four episodes that we outwardly have seen and since that means she's still having episodes no reason to do an EEG. So he wants to get another days worth of shots and hopefully do the EEG on Thursday. So it appears the Wed will be a day of hanging out although it seems like it is going to be a long day. She has begun to show the signs of the irritability. She woke up from her nap for lack of a better explanation just mad. She didn't want to be touched, talked to, held, sung to you name it if you did it it almost as a sure thing you were going to get a very disagreeable grunt with a swating of her hands. If this is just the beginning of that stage it is going to be tough for all of us.

A huge blessings to report though...We have a very high deductible on our insurance. So a case manager came in today and informed us that with our perscription coverage we are required to pay 30% of the cost. Ok well we have to do what we have to do. She then informs that we are being ordered a 5 week supply of medicine. 2 weeks for actual treatment and 3 weeks for the process to wean her off of the medication. Would you like to know what 5 weeks of medication costs?...$53,000 dollars. Yes that is fifty three THOUSAND dollars. I just about fell out of my chair and tried to calculate 30% of that in my head quickly but was overwhelmed by the mere cost. So here's the huge blessings part. There is a non profit company that helps families like ours and they are going to cover whatever our insurance doesn't. Can you say Yeah God! Now that is pure reason to be overwhelmed!!! Thank you Lord for Your daily Grace, Mercy and Blessings!

So as my day appeared to be winding down I have been faced with another challenge however I sense this one may be for personal growth of Grace. I had FINALLY gotten to sleep and very early mind you at 9:45. So excited because that meant I just may get a full night's sleep aside from feeding Carley. Well to my horror one hour later I am woken up to be told we have to move over to one side of the room as we are getting a room mate. Now I realize we have been blessed to have a room to ourselves up to this point but feel it is a bit of a neccesity considering we also have Carley. So the charge nurse moves us over and we now have maybe 3 feet of "open" walkable area to keep Raegan and manuever Carley. I told her Dr A had said we would be alone due to the immune system issues presented for Raegan. Her response was that the baby that was coming in did not have a contagious condition. So in my half sleep I just did as was told. She also said we were working on going home tomorrow I told her no Friday due to the EEG not being until Thursday and we can't leave the hospital until we get our ACTH that is being delivered here from out of state. She responded Oh I guess I need to go look at the chart again. Yes please do. So now I am WIDE awake and unfortunately when stuff like this happens my mind does not shut off and I may as well have had a pot of coffee I can't sleep. I am waiting for the nurse to come in to discuss some concerns like if Dr A had me cancel some of my help and all visitors then even though a roomate may not be contaigious what about their visitors? If I can't even take her down to the play room that is sterlized how is introducing more people ok? I guess it's not my battle and I will be Gracious but ask for clarification as what is best for Raegan.

Again thank you to all the prayers and support mean so much. George is overwhelmed by the support and prayers as well. many blessings!

Hardest/Worst Day of My Life

2010-10-12T04:27:00.000-07:00

So what I consider to be my short life I think that I have seen quite a bit. I have seen my dad die and cared for him until his last breath. I have seen two very good friends die of cancer and what that journey has taken their families through. I have birthed 4 babies, 3 naturally, 1 csection. I have been divorced. I have remarried and survived a blended family. I have seen my children excel and I have seen them make decisions that has torn my heart out. I have gained jobs, lost jobs and quit jobs. Don't get me wrong I am fully aware of my blessings but I am headed somewhere with this.

Yesterday began an adventure that I have never wanted to embark on. We woke up early, bathed, feed breakfast and waited. Finally I called the hospital and they said to come on down. Boy would I have rather been at the Price Is Right... Once we got here and checked in Raegan and George headed to the play room her toddling in her hospital gown and non slip socks. The dr showed up and we began. I really like him but have found that you have to ask questions. I think being in a profession where you are dealing mostly tragic/tough news to parents on a daily basis you would have to decide the best way to help parents get on board with their child's treatment because let me tell you first hand when he delivers it you just want to run the other direction and question his intergety as a doctor because you know he's just wrong. So anyway that brings us to the realization of how serious the situation is. We have know how serious the Infantile Spasms are but this course of treatment is just as scary. Apparently you run a very significant risk of infection since is super suppresses the immune system hence the reason for no visitiors not just here but at home which it now dawns on me means to leaving the house for shopping, church and stuff. We have to un enroll her in her class she was taking twice a week and no more play dates (I know it's all just temporary) Also, great chance for ulcers from the medication. Let's see he said it is guarunteed that she will be extremely aggitated and have severe diarrhea so I will need someone with us at all times. He discusses the mortality rate with us and at this point I see all of George's blood drain from his body as the realization sets in we're not joking around. This is serious stuff. No I realize that alot of this is numbers and side effects that are out there and there are side effects to everything but let's just say when you look a dr in the eye and see the immense seriousness and concern in his eyes and voice for your child you just find yourself in one of the scariest most vulnerable places that you never want to be in.

So we have since run the gamet of test. Blood, chest xray, ekg, and echo of her heart but NONE of these compare to the HORROR of seeing her get her first injection. I am amazed at how parents do this all the time. As I said before I thought I had "seen it all" I had been dreading this moment from the first second he said we had to start ACTH. I even had a family member who has gone through it try to prepare me. I thought I was strong. Everyone else around me tells me I am and how they don't know how I do it. Well, let me tell you i don't. The nurse comes in needle in hand and gives me some half a..... explanation of how I am going to give Raegan this shot. It was so fly by night that I was like SERIOUSLY that is the only instruction you are going to give me???? Well, Raegan was napping and the nurse decides we'll just give her the shot. Not wake her up just the shot. So we roll her over and the nurse has me hold her. I WAS NOT prepared for the obvious knee jerk reaction of poor Raegan. So needless to say the nurse stabs her, Raegan jumps pulling the needle out of her thigh and so the nurse has to jab her again. All while George looks like he is going to pass out, Raegan is screaming and I instantly go into the shock of "What the hell am I doing here? You want ME to do that to her?" All in all Raegan took it like a champ of course she cried but she was over it quick and started playing. I have NEVER felt so violently ill in all of my life. To know that I in a mear three in a half hours have to do this myself. They gave her her second shot at 10 last night and it wasn't any easier for me but this nurse explained things alot better. Geez she even brought me an orange and an needle so I could "practice" jabbing the needle into the flesh of the orange before I have to give Raegan her shot at 8am. "OH YEAH because jabbing the flesh of an orange is SOOOOOO much like jabbing the flesh of my baby!" I was instructed how when I give the shot I will want to make sure to pinch a good fat part of her muscle and stick the needle in like I was "shooting darts" and to make sure the needle goes all the way in. Did I mention the needle is no joke AT LEAST an inch long.

Needless to say this is a traumatic experience for all involved would be an understatement. Poor dad left for work at 3:30 this morning for the worst two hour drive to work I am sure he has ever had. Please pray for him as he has to be away from his family, he says he is going to try to come back tonight but honestly I don't see how he can he has been working 12-14 hour days and then to drive back two hours just isn't safe. Pray for me that God will give me the strength to do these shots I know they are quick but to have my little girl look me in the eye is more than I can handle. Pray for little Carley that she doesn't pick up any germs while being here with us, Pray for little Miss Raegan against any infection, ulcers, cardiovascular effects and peace for the sweetest little girl I know.

If you made it this far thanks for bearing with me I told George this is the best way for me to "get it out''. I am so grateful to all of our family and friends that are supporting us and believing with us for God's hand to touch Raegan for complete healing. We love you all!

Raegan's Update

2010-10-12T04:26:00.000-07:00

So it seems like eternity and just yesterday all in one since I last posted. Since last posting we had started Raegan on Sabril which is a new medication to the US but not to our dr. I was SO hopeful that this would be the medicine to do the trick to stop her seizures. Well we went last Friday for another EEG and although as the dr said it was REMARKABLY better than the one from her hospitalization is was not good enough as she has to have ZERO seizures. So he has increased her medicine twice this last week and we go for another EEG this coming Saturday. He said that if her EEG is not 100% clear then we have to change meds ASAP to ACTH...Let me just ask you if you have ever been kicked in the gut...? I guess I had just convinced myself that this treatment would work and the ACTH would never be an issue. Here is why I am devestated by this news. It means she is still having seizures, the ones we see and the ones we can't see. ACTH is a steriod that is injected once daily in the thigh. Apparently it is a GEL that is kept refrigerated and is much harder to administer since it is thicker. Generally speaking weight gain/puffiness is a side effect due to it being a steriod then on top of that on a daily basis we will have to check her potassiam level, do a urine speciman, a stool speciman and take her blood pressure. All of which sounds rather tramatic not only for her mother but for little Raegan as well...

Please be praying that between now and Saturday this medicine some how just kicks in and does it's thing so we do not have to go this route. I had someone say to me "Well, isn't it much better that these seizures don't have her on the ground convulsing" meaning aren't they "better"? Here is the best explanation I can give and forgive if I am wrong. Typical seizures do not cause damage to the brain. However with Infantile Spasms damage is done with each one therefore it is imperative they are controlled just as soon as possible. The longer left uncontrolled/contained the more potential for developmental loss of functions and speech. We are blessed that her Infantile Spasms started so much later as they generally start between 2-8 months before developmental stages are met. Since hers started later she had already met alot of her milestones and so far has not "regressed".

Thanks so much for the support and prayers it means alot to us! The road seems long and when you add a newborn and dad working out of town during the week our only choice is to depend on Him...

Long Overdue...

2010-10-12T04:22:00.000-07:00

I am hoping this finds you all well. It has taken me some time to get my thoughts and feelings together before I could write all this out. The last few weeks has been a roller coaster to say the least! As you probably know Miss Carley Faith arrived in our world Friday August 6th at 8:31 am. She was a whopping 10lbs 6oz!!! She is just beautiful and looks just like Raegan. I really hope to get pics up soon but it will probably be a while.

Unfortuantely this joyous event has been somewhat overshadowed by news that we did not expect. The Saturday before Carley's arrival Raegan had a seizure. They are what we now refer to as "episodes". We were at ER on Sunday morning, her dr on Monday and a Pediactric Neurologist on Tuesday. Her appt on Tuesday was at 1:15pm and by 1:30 we were being admitted to Sutter Memorial Hospital in Sacramento. During the course of our stay there she underwent 36 hours of EEG scanning (monitoring of brain waves), an MRI, blood work, and a lumbar punture. Thank goodness all of the tests except her EEG came back with normal findings. Her EEG however came back with a diagnosis of Infantile Spasms. (To give you an idea in the dr office he said I think this is Infantile Spasms, Pray that I am wrong) This is a very dangerous condition in infants and requires IMMEDIATE attention and medication.Honestly I only see God's hand in the timing of how getting her into the hospital and having all the tests happened before the csection on Friday. We were told we couldn't get into the specialist until the beginning of Sept and here not only did we get in but we had all of our tests and diagnosis in 3 days. The doctor did tell us to leave the hospital hopeful as she falls in the "best case scenerio" for the condition and we could hopefully see and 80% complete healing with in the year. We will not know the long term effects or what other seizure issues she could have years later down the road but we are not going to focus on that now as getting her episodes under control and stablized on her medications is our main priority right now.

As you can imagine we are exhausted! Getting home Thursday night at 11pm and to the hospital at 6am to have a baby and then deal with all of the other issues in between has been a challenge. George continues to work out of town and the support of our friends and family has been amazing!!! We love you and and appreciate all your prayers.

17 days and counting...

2009-05-18T18:50:00.001-07:00

We can not believe it!!! 17 days left until the due date and that is if she doesn't decide to come early (or late) The days are going quickly. Last Friday was my last day at work and it was just surreal. Bittersweet actully. I loved the company I worked for and honestly places like it are very few and far between! However we are very excited about the adventure we are about to begin! I seriously do not remember nesting as much with the boys as I have with this baby. I go into her room to try to find things to do and there really is nothing. We even have the carseats installed and all of our bags packed by the front door. Which probably isn't too bad of an idea. We have faired well in our painting endeavor which only leaves the kitchen/dining room left to be done. If we are lucky we'll have it done in the next day or so!

The school year is winding down and that leaves even more change in our lives. Cody will offically be in high school and Dustin will be out. With Taryn married and the baby coming I guess we can say it has truly been an amazing, blessed, crazy and surprising year! I attached a few pics and probably won't get another post in until Baby Raegan gets here. Until then, Hugs and Kisses!

Where's the time going???

2009-03-15T11:29:00.000-07:00

So I can't believe it has been since January since I have posted. The days are just flying off the calender! Things aroung here have seemed like a whirlwind but good. We have been painting machines! We painted Cody's room Lime green and white which is something he has always wanted. Then we moved to Baby Raegan's room. I was POSITIVE I would NOT paint pink...well it's pink and white and I LOVE IT!!! I surprised myself. Then it was on to the laundry room, our bedroom/bathroom, hallway and the front bath. Honestly this was a project we never thought we could do by ourselves. However we have found out we all make a pretty good team! Cody takes care of all the hardware, light covers, vents electrical outlets and such, George tapes things off, Cody and I cut in corners and edges. We try to do all this on Friday evening and then on Saturday we get up early and roll it out. It has been nice since doing it that way we managed to save some of the weekend for rest. The next challenge will be in 2 weeks when we tackle the living/dining/kitchen areas. That will probably take two weekends but we will be so glad when we are done!

We are nearing the end of the school year and ticking off our milestones for this year. Taryn just got married yesterday (I'll post pics later) We could not believe how wonderful a day it was! The boys are winding down the school year and we are trying to prepare best we can for the baby. Speaking of her we went to another ultrasound and got a surprise 3D picture. She is so cute! We can't wait to meet her! Hope you enjoy the pics and are having a blessed day!

Read the Poem...!!!

2009-01-22T04:59:00.000-08:00

This is a cupcake, yes it's true

but in the middle is pink or blue.

So take a bite and you will see

a brother or sister the baby will be!
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We're having a GIRL!!!!

HAPPY NEW YEAR!!!

2009-01-03T02:52:00.000-08:00

Here is to all of our family and friends. We are wishing you much prosperity, health and happiness for the upcoming 2009!!! As 2008 came to a close we look back and reflect the many memories throughout the year. It is so hard to imagine how quickly time flies! Taryn will be getting married, Dustin and Cody will be graduating and we will welcome a new baby. Events in life can come suddenly and with much surprise! Never take a day or moment for granted, love those around you every moment, and live life full of joy and always remember God is in control and will see you through! Many blessings as we all start our own new adventures in 2009!!!!

Baby Rocko 10 weeks 3 days

2008-11-11T06:20:00.000-08:00

So you probably won't be able to tell a whole lot but here is our first "good" picture of Baby Rocko. Right in the middle of the black pickle the head is at the top with two tiny white dots a little lower that are the arms, the light gray body and two very faint dots towards the bottom are the feet. Most people can't make it out and we can't blame them. We were able to see the heart fluttering on the screen which is more amazing than words can express. Since this ultra sound was much more accurate we are now back to our June 5th due date. Yeah right in time for the graduations!!! Hope all of you are well...Blessings!

HAPPY BIRTHDAY CODY!!!

2008-11-10T18:10:00.000-08:00

Well, with not alot of fanfare Cody turned 13 on Friday!!! Can you believe it?! I seriously do not know where the time goes. He is growing up so very fast these days. He is dying to sport a mustache and cherishes any achievment of growth. He shares his birthday with his dad so they spent the evening with him hanging out which I am sure was fun for all. They got home early and the plan was to celebrate when George got home from reffing his football game which we anticipated to be about 10:30. Well, Cody and I crashed out by 9:30, Dustin was in bed shortly after and poor George didn't get home until after 12. Needless to say Cody was a bit disappointed and Saturday morning said there was no use in celebrating because it was already "a day late" however he didn't know the surprise he was getting and George really wanted to be home to see him open it. We had gotten him a Ninetendo DS Lite which is something he has wanted FOREVER and we kept saying no to it. Needless to say he was so excited that I think that it really didn't matter to him that he was opening gifts the next day. Birthdays come and go but it sure was nice to see him light up at his surprise. The only problem is at this point the birthdays keep getting bigger and bigger! Until next time...BLESSINGS!

2008-10-22T19:34:00.000-07:00

What wonderful time of the year!!! I love the Fall season. There is nothing more gorgeous to me than an early crisp morning with the sun rising and the dew on the grass with all the color changing around us! So I thought I would update you on how we are doing!

All is well in our camp. Dustin and Cody are both plugging along in school both with the same agendas...GRADUATE. Everyone has told Dustin what a task his senior year will be and he is coming to find out that it is all true. He is in the process of beginning his senior project which will be to paint and restore an old tractor. Hopefully it will be approved by his board and the work he has already put into it won't be wasted! As for Cody he just needs to keep his grades in check. He just finished his flag football season and is at the start of soccer. He seems really excited about it and should do well!

As you know there are lots of events coming up in the next 8 months. Another adventure is Taryn is getting married! It is official. She will be married March 14th. She just got her ring and the dress. I do have to say I was not prepared to see her in her wedding gown. It seems like just yesterday that I met her for the first time! I even remember for my birthday that year her and George went to OSH and bought a stuffed beaver and decorated my car at McDonalds. Wow where does the time go?

In other exciting news...I saw the baby's heartbeat. I went to the doctor and had an ultrasound and lo and behold there was the fluttering of the heart. Amazing!!! I am one week behind what I thought so the due date is now June 12th. At least I won't have to worry about being in labor and the boy's graduations however it does guarantee me a spot in the "Big as a house" category! We return to the doctor in 3 weeks and they will be able to tell then whether we are having one Baby Rocko's or two... until then

Blessings, Blessings, Blessings!

SURPRISE!!!!!!!!!!!!!!!

2008-10-05T18:38:00.000-07:00

The picture says it all!!!

WE'RE PREGNANT!

We know this is REALLY early but we are just stunned! After all these years of not preventing and no babies, we were resided to waiting to spoiling grandbabies. Apparently God has other plans for us! Anticipated due date is well let's see...

Cody graduates June 3rd

Dustin graduates June 4th

and here comes baby

June 5th

Wild Huh!?

Ahhhhh....

2008-09-30T20:35:00.000-07:00

Just thought I would post pictures of my Senior!!! More will come later these were just what we had to choose from for the yearbook. We are having pictures of both boys done at the ranch since Cody will graduate 8th grade and Dustin High School.

Let's Get Ready To...Football!!!

2008-09-22T21:00:00.000-07:00

So it has been awhile since the last blog. Where does the time go? It has been a VERY BUSY time too! Football has officially kicked off, Cody has rejoined his traveling bowling league, and we spent a family weekend in San Francisco. So I'll start with football...

Sometimes in life we have such high expectations that we will never know our true character until we are face to face with huge disappointments. So goes the beginning of our season. Our first two games have both been away. Our first game was in Colusa and boy were we looking forward to a little healthy family rivalry (sorry Dave :) ). Actually we had a very good game with the Redskins but we lost a disappointing 7-6. Needless to say for our boys it was heartbreaking but NOTHING, I mean NOTHING could have prepared us for the next week. We played Sutter which we have always known was a "Power House" team and they had just returned from Texas with a 38-9 win not to mention that our current coach was an assistant at Sutter in years past. So here's the heartbreak, we lost 61-0. Yes you read that right 61-0, OUCH! It was 21-0 in the first THREE minutes of the game. As hard as it was to watch I was very proud of our boys and they soldiered on despite feeling humiliated. Our next game was against Lindhurst AT HOME, and I had the pleasure of having the night before dinner at our house (30+). We had a great time, but the next night was sadness again as we suffered another loss 55-12. At this point our boys were really struggling to keep their heads up but forged on at practice. SO FINALLY we had a home game that we won this last Friday night...GO LIONS!!! It was an awesome game, with a final score of 20-12. And not to mention Dustin made a tackle that the game announcer was still talking about at school today! So now we gear up for Homecoming Friday.

As for Cody he has been waiting all summer for his bowling league to start again Bowling has been the one thing he has been able to call his own and takes great pride in his endeavors with it. At his first Saturday he was recognized for his last tournament with a high game patch of 161. He is looking forward to the tournaments this year which there are fewer of. He will bowl Nov. 1 & 2 in Danville with Jullie at the end of the season with Rocky. We are all looking forward to great family memories with our trips. Since school has started he also decided to join the flag football team. They are 4-0 and hope to stay undefeated for the rest of the season. So if he's not at the bowling alley, on the flag football field then I can guarantee you he is on his skateboard somewhere. Go Cody!!!

So finally for the family trip. It was absolutely WONDERFUL. it was Taryn's 22nd birthday and we wanted her to have a great time. We left bright and early to pick her and her boyfriend John up at her house. We managed to stay pretty close to the schedule and pulled out of Yuba City by 7:20. We made great time and managed to catch the ferry in Vallejo at 10:00. It was such a treat to see the excitement on her and John's faces as we made the journey across the bay. They both stayed on the outside deck and listened to toe roar of the diesel engines! Dustin and Cody liked it as well with Dustin staying outside most of the time and Cody discovered a new favorite treat, Irish Creme coffee. Once at SF we went straight to Pier 39. It can be a little overwhelming because we just didn't have enough time to fit everything we wanted into one afternoon. Clam Chowder Bowls were the first item to devour on the list, then straight to the Fudge Shoppe, and then to the aquarium. Which I was very impressed with. Very reasonable with quite a bit to see. We ended our afternoon at Bubba Gump's where Taryn was a great sport when they came to sing happy birthday to her and made her stand on a chair in front of EVERYONE!! We caught the ferry home where us "old folks" were ready for bed! We ended our weekend with a day long visit to Six Flags. Again, too much to do, not enough time. When we first arrived it really didn't seem like there were very many people there but after about two you would have been just as comfortable walking in a herd of cattle. People were everywhere! Everyone had a great time (except we REALLY wish Cody would have gone on a roller coaster)! We had a safe trip home and were very thankful to sleep in our own beds.

So for now, hope you are enjoying the start of a new school year. Many Blessings to you and yours!

Time Already???

2008-08-14T08:06:00.000-07:00

Wow! Where did the summer go? I can not believe it is back to school time already! It just amazes me how this whole summer when it was time to get I practically had to yank the boys out of bed but not on the first day of school! Both of them were up, dressed and out the door before I knew it. Now don't get me wrong tomorrow morning will probably start the battle of "GET OUT OF BED!!!!!!!" routine but for now it was nice to get them off. I have added a few pictures. Dustin and Cody just before they left for school. What a huge year this is for both of them. Dustin a senior and Cody in 8th. Wow, two graduations in one year. Yikes! So I thought I would share how our day started...in pictures. So the pic at the top is my two boys with their respective modes of transportation, however Cody does get to ride in Dustin's truck on the way to school. AND THEN...Dustin got to participate in a "What Not To Wear" to school to show "the girls" what is not allowed: Straps less than an inch wide, short shorts, short skirts, TShirts with alchohl/drug sayings. Doesn't he look SEEEXXXYYY!?!?!? The scary thing is as we were putting the outfit together he did comment on how comfortable the shirt was. Too Funny! I also included two pictures of two friends that work at the school who are Dustin's "second mom's" Thanks guys, you rock!!! Anyway, it was a funny was to start the day and now we look forward to FOOTBALL!!!!

Letting Go...

2008-08-06T20:33:00.000-07:00

So last week was the fair and it has come and gone. What an exciting time of the year! This year Dustin raised a pig for the auction. He got her in May sometime I think and learned a whole new aspect of responsibility. Midnight as he called her turned out to be a great pig.

Being a part of the fair is an intense weeklong process not including the months that lead up to it. People don't realize that to the public the fair opens on a Wed. but for the kids with animals the entire week before setting up stalls, pre-weighing and getting ready to transport to the fair is a big deal.

So on that Monday (VERY EARLY) Dustin and his dad headed out to pickup pigs and get to the fair gate as early as possible to try and beat the crowd. Yeah! Success for them. They spent the next two days, prepping stalls, offically weighing in, fine tuned Midnight and anxiously awaited the opening of the fair. Last year was a very tragic year because Dustin raised a pig (Eleanor) but she died to an unforseen event out of his hands and he didn't get to take part in any of the fair events. So this year was a BIG deal. Anyway, Dustin and Midnight did very well in their classes. They placed 7th overall(out of about 30) in showmanship and then they placed 2nd in their weight class (260-270). This was a great thing because they are judged solely on the quality of the pig.

The final event for the kids is they then spend all day Saturday at the auction. Dustin and Midnight once again did very well. They earned a whopping $6.00 a pound. Go Midnight! However, the auction is a very bitter/sweet experience. So the title of this post, Letting Go...

Dustin is very well aware of EXACTLY what happens when an animal is sold at a terminal sale. He's been on the ranch when the butcher has shown up to tend to his dad's animals. So on Sunday Dustin came in very late and said his ag advisor basically told him "Dustin it's time to go home". I think it was harder for him to say goodbye than he thought. He said that not only spending months raising Midnight but spending five solid long days with her, he really bonded with her. So...considering his grandparents bought his pig, when he left the pen he patted her and said "Well, girl I'll see you later" then he realized what that really meant and decided it will be a LONG time before he eats pork at grandma's house...

Welcome!

2008-07-28T20:18:00.000-07:00

So here I am blogging for the first time. I decided to start this because I have been dabbling a little in blogging on my MySpace page. I have found it to be very relaxing and a release for some of the antics that can go on at any given time. Right now Cody and I are sitting down to watch a movie, George is at work and Dustin is preping his pig for the fair. This summer has found us to be over the top busy. The luckiest one has been Cody since he got to pretty much hang out for the summer and just be a kid. (He did have his chores though). Dustin found himself out at the college four days a week (9-1) and then to football practice (4-6) somewhere between all that he managed to hang out with friend and do some make up work for credits. As usual being the parents of the house George and I went to work. (Or as Grandma always said "You GET to go to work") Very profound considering she grew up in an era that knew what it was like to go without and what a blessing and privilage a job was. (See there's the random thoughts I was talking about) Anyway, as we see summer wind down the boys prepare for school, we continue to work and we're looking forward to a weekend trip at the end of August to celebrate Taryn's 22nd birthday. Hope you all spend the last days of summer doing whatever it is that you want!
Blessings!!!