Tuesday, July 31, 2012

First Night On Our Own

We made it!!! The first night on our own!! After we got released yesterday, we went straight to CVS to get her meds... well, they didn't carry her meds in liquid, so I told them to find a Pharmacy that does... I don't care who it is, I needed to get these tonight. So he called around, to several pharmacies.. and not just CVS... finally found them at "Vitality Drug & Surgical". It was 7:30pm, and I was told they closed at 8pm... so we got over there, and I got her meds! Really neat store... sold all these hospital supplies too. Just incase anyone needs their info... especially any kids having surgery done by TCI, here is their info: 257-07 Union Tpke., Glen Oaks, NY 11004..... 718-343-0070. There is a pharmacy in NS Hospital, but they were closed time we were released. Anyways, we asked Kaylie what she wanted for dinner, because she hadn't ate her dinner tray before we left. She said, "Happy Meal"... so luckily there was a McDonald's next to the drug store. We took everything back to RMH, had dinner, and got her next doses of meds. She drank 1/2 her chocolate milk, a few fries, and 1 1/2 chicken nuggets. I know its not much.... but its a lot more than what she has been eating! Then we went up to our room and watched TV and went to bed. We all woke up around 8pm... I know its early, but that was sleeping in for us! Her neck was a little stiff feeling when she woke up, that because we slept in a little, and her missed her does at 6am. But we all slept good, and got her, her meds. I told Ben, that we need to make sure, that we get up at the right time... so we can avoid all that. Ben and I got cleaned up, and we went downstairs for breakfast. Another family was down there, and saw Kay (which I feel we will be getting a lot of looks, due to her head)... but the grandmother was making pancakes, and made some for us. Very sweet! I told Ben that I want to make some cupcakes later this week for the house. after breakfast we went by the play room, then came back upstairs to watch some TV. Ben's dad & wife is coming to visit, along with his Aunt Harriet, and cousin Tom... they will be here near soon.
I am so proud of how well she is doing!

Monday, July 30, 2012

Released From the Hospital!!!

Kaylie got to go home to the Ronald McDonald House tonight!!! She did well in her MRI, woke out of anesthesia, we walked around a little, then were told we were going home!!! She was so happy! We will be staying at RMH relaxing, resting and recovering, till we see Dr. Rekate later this week. I was happy to be leaving with her, but sad to say good-bye to some amazing people at North Shore Hospital. It was so nice to have doctors, nurses, and other staff members "get" the condition my daughter has, what she has been going through, and to be able to know how to help her. I want to say THANK YOU to the best anesthesiologist we have ever had, Dr. Meera Suresh Goradia, MD, she was in with Kaylie's surgery, and did her MRI. The nurses: Laurie, Terry, Carol, Christine, and Beatrice. The Child-Life Specialist: Elisa & Jessa, and of course to the man that has made my daughter's quality of life better... I can never Thank him enough, Dr. Harold Rekate.

Look how well she is walking!!!

We just found out that Kaylie's post-op MRI is scheduled at 12:30pm.

Post-Op Night 3

What a great night!!! After writing yesterday's post, I went back to RMH to get some dinner, and make Ben a plate for when he gets back. While I was there, I got to meet Julianna, one of the moms from some groups I belong to. Her son is having Tether Cord surgery on Tuesday. He also has Chiari too. But, we had dinner together, talked some. It was great! When I went back to the hospital, Kaylie had walked to the playroom again to do some more sand art, took her medicine, and walked to the pantry to get a couple cookies. (The pantry is a little room behind the nurses desks, that we can help ourselves to, it has a water & ice machine, cookies, and a fridge with sodas.) She came back to her room and ate a 1/2 an oreo, and a little bite of another cookie. She did not eat her dinner tray.
Then by 8pm, Ben had left, she was due for 3 of her meds, which she took them, and ate some chocolate pudding.... choc. pudding is are "take away the taste treat". She then wanted to walk to the playroom to pick out a DVD, so we did... and she stayed up till midnight watching movies. Then had more medicine, and chocolate pudding, and went to bed. This is the best part.... We Slept The Whole Night.... at least till 6am!!!! We got her up to take her medicine, check vitals, use the bathroom, and we chatted with the shift change neuro. Which he said, they are going to try to schedule her for an MRI sometime today... we should know what time about 9/10am (when the scheduler come in). He also asked has she been fitted for a neck brace yet... I said no, and he said someone would come in to do that. So.... I don't know if that's a sign that we may get released this evening, or tomorrow. I'm sure Dr Rekate will let us know when he comes in! But she is doing A Lot better!!! And back to sleep now! :)

Sunday, July 29, 2012

Post-Op Day 2

The morning started off good, I went back to the RMH for a couple hours, and Ben was here with here. She didn't eat breakfast this morning. She did walk to the nurses desk this morning, which is about 10 feet away from her room. When I got back around 11am... that's when thing went down hill. She started to have some pain. She was looking really stiff. I tried to see if she wanted anything to eat or drink.. she had a little apple juice. Around that same time, she had her first visitors! Her Uncle Ray & Aunt Carol... they are from the Philly area. It was time for her meds... and she needed to take them orally, so it was a little bit of a battle, but she got them. I then got her to sit up in a chair for awhile, take some more apple juice and water. Lunch tray came... wasn't interested, but she did take one small bite of ice cream, and a very small piece of mozz. cheese stick (the size of my pinky nail). Then after sitting for about 10 to 15 minutes, she wanted back in bed. She was tired, but we got her back up to weigh her, and to take out the rest of her IVs (so now she only has the BP, pulse ox, and electrodes on for her heart). Then we decided to walk to the play room... and she did... Wonderfully!!! We hung out in there for a while, looked at the fish, did some sand art, marker art, and visited with Ben's brother and sister-in-law. We were probably in there for about thirty minutes, and its about 25 to 30 feet away from her room. She is still considered as a PICU patient, in the same room, and suppose to have an MRI tomorrow. As of now she is sleeping really well, and hasn't vomited since 3am!!!! Let's Go Kaylie!!! I am so proud of my little peanut (as Ben would say)... she has been such a trooper!!

We wanted to Thank her Aunt & Uncle for coming to visit her today, and for the Pluto & card!!! XOXO

Post-Op Night 2

Not much to talk about, a lot better night than last night!!! She was sick a couple times, then about 3am she woke up, was kneeling on her bed, yelling at me to wake up, she has to use the bathroom. So we get her up, to go. Then she got more meds... then went back to sleep for like 15 min, woke up saying she was thirsty... I gave her a little sprite, and she got sick again. That was the last time she got sick... Shifts just changed, and a neuro doc came in... said her incision is looking good, checked her neuro vitals... and that was about it. They eventually want to get her on oral meds... no more IV meds. So I think we are going to do another rounds of morphine... then try to go to oral codeine. That's about it... will give another up date, later in the afternoon.

Saturday, July 28, 2012

Post-Op Day 1

So as y'all know last night was a long night. And she had stopped vomiting around 5:30am. Around 10am, since she was not vomiting... they let her have sprite.(She had been asking for sprite all night long) She was holding it down. Around 1pm, they said she could have a little lunch, and she did... she had even said she was hungry. But at 2pm... she started vomiting again. I think its the Morphine causing it, and she he is on two different anti medics. I had stayed till 2pm, waiting for Dr Rekate to come by... then decided to go ahead and go back to the RMH to do some laundry, and take a shower. Ben stayed with Kay. Of course while I am gone, Dr Rekate came by. I had left Ben with my list of a few questions. Dr Rekate, said to expect for her to still be this way tomorrow, but after tomorrow we should start to see a change. He said her incision looks great, no signs of CSF leak.

Something I did not tell everyone yesterday about her procedure was that besides having the Posterior Fossa Decompression surgery, Dr Rekate also did a C1 Laminectomy as well. I wanted to know why he did this, before telling everyone, so that I could let everyone know the reason. This is where they remove a small part of the Lamin of the C1 vertebrae. He did this to allow more room for the herniated part of the brain going down into the spinal column, and for there to be more room in that area for the CSF to flow. So yes, to those that are asking... she had a small piece of bone removed in her C1 and then also a small piece of the Occipital part of the skull removed. And the dura (outer lining of the brain) was opened, and patched (he used the inner lining of the skull for this piece...using her own material, = less infection and less rejection). Then a small, thin titanium bridge placed over the dura.

I then came back around 6pm... she was sitting in a chair, which she had done a few times today. The nurse was the first to help with neck exercises, then the Child-Life Specialist came in with her exercise chart, and her personal treasure box. If she did her exercises today, she got to pick a prize in her box. Ben said she did very good. Her neck is very stiff right now. While sitting in the chair when I got back, she started vomiting again. We cleaned her up, sponged bath her, and put some clean leopard pjs on. She also had her urinary cath removed, and her Aline IV removed, while I was gone.  So now she is just hooked to 2 IV lines (they are special ones with 3 ports each... first I have ever seen), BP, still electrodes on, and pulse ox. She then got back in bed, and has been sleeping. I am hoping for a more restful night for her. Last night and today was especially tough on us.... for me very emotional. But hopefully she will be getting better soon. Thank You again for all the continuous prayers, we appreciate it.
I also have to had.... these have been some of the best nurses, I have ever met... Amazing!!!

Post-Op Night 1

Yesterday evening Kaylie started having a rough night. She started vomiting a lot. This went on every hour, hour and a half. At first they thought it was because she was drinking too much after taking oral Tylenol, but now they think she just hit that "second day" that everyone talks about earlier than most. They said, normally adults/kids just lay there, and sleep day out of surgery. Kaylie on the other hand was trying to sit up, literally right after surgery in PACU. She continued to be that way into the evening and night, at one point she tried to stand up.... mommy had to get involve, and tell her to lay her but down. Anyways... they seem to think because she was so active, and trying to be a little head of the game... the vomiting set in. They had already started her on Zofran, right before coming out of surgery, then she had more last night, since she was still vomiting, they did another anti medic too. She has only had Tylenol and Morphine for pain... and her pain levels are good... mainly her neck hurting. She keeps asking for Sprite... or should I say demanding it from the nurse and I! Which I uses is a good sign, they just keep telling her no, right now.... they wanted her stomach to settle down some. The attending neuro doctor came by this morning saying everything looks good, and that possibly later today they will take her urinary cath out, and some other wires. And she may get to have some sprite today. He said her incision looks great. Dr Rekate, should be in later this morning too. Last night I sent Ben back to RMH about 11pm, to get some rest... which was the best decision, just for the fact, I was up all night with her, being sick, and he is coming back this morning... and I can go shower, do some laundry (she got sick on a few of her favorites), and take a nap. We were told by Dr Rekate, and some other moms that have gone through this... to try to take shifts... so we both get rest. I truly feel like Kaylie went through the "bad second day" last night.... she finally stopped vomiting around 5:30am, and went to sleep. She has been sleeping since.
We will keep everyone posted....

Friday, July 27, 2012

On the pediatric floor

After Kaylie got out of surgery today, she went to PACU. This is where they go to bring them out of anesthesia. When Ben & I went to go see her, she looked GREAT!!! She wasn't swollen or puffy in the face, her color was good, she was in and out, talking to us... asking for a drink, her cow, and stuff. She was trying to sit up, and has been changing positions on her own. She was in PACU for about an hour, then they moved her to PICU. She is still doing great, they gave her meds... and she is resting. She keeps asking for a drink, so the are slowly giving her sips of water. 

As for the surgery... Dr Rekate said it went very well, very smoothly, no complications. He said it was very crowded, so much so there was an indention on her brain from being pushed up against her spinal cord. They said as soon as more room was made... the cerebral tonsils popped back up a little, and the CSF flow is good. She has no staples or stitches on the out side, they use steri strips, kind of like heavy duty tape. These will come off on their own in about a week to week in a half. Tonight is just resting, keeping her meds maintained, and we will see Dr Rekate in the morning. 

I must say, Ben & I are so impressed with North Shore University Hospital, and the staff here. We are so glad we traveled here for this surgery. And Dr Rekate was outstanding!!! 

Thank you to all those that have been praying... now just to get through the next couple days. I will probably post the next update tomorrow, mid morning. 

Oh!! To our family in the waiting room.... Thank You for your support today, and Thank You for the stuff animals... she will love them, when she is more awake!!! Im still praying for a smooth & speedy recovery for your father!

She's Done!!!!!

She's Out!!! Dr Rekate just came and talked to us... everything went well, they are finishing up, and we will get to see her in about 30 minutes to an hour!!!! Lots of hugs were given to the doctor, and to our supportive family here in the waiting room, that are waiting on their husband/father!!! Today is a GREAT Day!!!!!

Still no word...

Still no word, so it's time to start writing, to get my mind off things. I can't say enough good things about the Ronald McDonald house of Long Island!! They are truly a great organization, and this chapter is amazing. They really try to provide everything possible for you. If you forget something, they have it!! We had bought laundry detergent before I found out that they provided it too, its in the office, you just have to ask. That's Ok, I will just donate ours to them, before we go home. The dinners donated from different groups have been great. They have wiis, and other video equipment for your child to borrow in a room... you can check out DVDs for your room... each room has a player. We were given tickets to How to Train A Dragon Live Show, for Aug 4th... if Kaylie is feeling up to going. They are giving parents messages on Wed, to help relieve the stress and tension of things. It truly is a giving organization, for so many families that need to travel.

On another note, we are sitting in the waiting room, which is divided into 4 areas. In each area there is about 14 seats. There is another family in our area, waiting for their father/husband to come out of surgery. He has prostate cancer. They asked about our T-shirts, and I told them all about Kaylie and Chiari... gave them some of her bracelets. They are wearing them now. Such a loving family, and have helped a lot lighten the mood. Sometimes, one just needs a good laugh! I didn't get their names, but when they look at Kaylie's blog... I wanted them to know we truly appreciate their company, and we are praying for a smooth recovery for their husband/father/father-in-law. May God bless him and your family lots of wellness!

Like I said, still no word... I'm sure the main surgery has already been started. I will let everyone know an up date, when I hear something.
Still no up dates.... haven't heard anything. Just wanted to let you know! 

Only one of us could take her back to the OR room, and Ben took her back, I was a little upset, and didn't want her to see me upset. He got to stay with her till they put her under. She was given a medicine to calm nerves, so she was a little loopy, but in very good spirits. Before she went back to the OR, she was smiling, and Ben said she wasn't scared at all. Ben & I are wearing our "Team Kaylie" shirts!!!!

Headed to the hospital, she is doing good.... I think it's mom & dad that are more nervous & stressed.

Thursday, July 26, 2012

Pre-op Day

Today was Kaylie's Pre-op day. We had to be there at 9am. Basically it was an appointment to do paperwork, check Kaylie's vitals, and do blood work. Then a child-life specialist, Elisa, showed us around the hospital, and where Kaylie will be recovering. We visited the Children's Playroom, where they showed us Chiari Dolly, and how she has IVs, and monitors on her to help her get better. Kaylie was shown pictures on an iPad of what Dr Rekate will be wearing, what the OR room looks like..., then she got to play with the gas mask, and a cath. that they will use. I think this helped a lot, because she isn't nervous at all tonight, and was wanting to look and touch those items. There are two child-life specialist that will be with us during our stay. Elisa, who showed us around today, and then Monday Jessa will be there. Jessa is the one that called our house before we left. North Shore University Hospital is NOT a Children's Hospital, BUT they have a terrific pediatric floor. We got to meet some of the nurses that were on the pediatric floor. The Child-Life Specialist Group have activities set up for the kids that are recovering there. Today a lady named Donna came, to let some of the patients plant plants. Kaylie planted one with her, and we spent some time talking to her. She comes to the hospital twice a month to do this. I thought it was really neat. Amazing Hospital!!!!
Children's Playroom
Chiari Dolly

Donna helping Kay
plant a plant.

After our appointment, we went and got some lunch, then decided to enjoy NYC for the day, since the rest of the time here will be relaxing, resting and recovering. We took the Long Island Rail Train into NYC. There we took subways around to different areas. We walked around, looked at stores, went to see the One World Trade Center, previously known as the Freedom Tower, and went by St. Patrcik's Cathedral to light a candle for Kaylie. While we were there I spoke to one of the resident Priest there, and he did a special blessing over Kaylie. He also said they would pray for her at the 7:30am Mass. It was very important to me, to do this today.
On the Train
Time Square

On the Subway
Hello Kitty (???) lol

St. Patrick's Cathedral

One World Trade Center

Then we got back to the RMH around 6:30 for dinner and a relaxing evening. Kaylie had to take a special bath/shower. Dr Rekate wanted her to wash her body and head/hair in Chlorexidine Gluconate soap. They said this helps reduce the chances of infection after head and neck surgery. She was to wash with it, then let it sit for 2 minutes before rinsing it off. As my family & friends would know.... I had the timer out. This is considered a very important step for them, with special instructions, and you better believe I was going to go by the book on this one!!! We had a quick snack, and pretty much calling it a night. She can't have anything after 11pm.
Tomorrow we have to be at the hospital at 6:30am EST, surgery is scheduled for 8:30am. I will try to post as many up dates as possible.
Thank you for all the support and prayers.... tomorrow is a big day. Before I go, I would like to let everyone know I added a new section onto the blog, called "Chiari Stories".... the voices of others!

Wednesday, July 25, 2012

Hello NY!

It was a long day, but we made it to NY! Kaylie did well on both flights, a little head pain... but not too bad. She was also a little nauseas on the first flight, but didn't get sick! I have to tell you how we helped Kaylie's head... because this was a huge concern to me, coming out here. So Kaylie prefers a heading pad for her head, ears & eyes. But, without a plug in... I wasn't sure what I was going to do, and she can't have her naproxen right now, due to surgery. So I made a mini heating pad...(see pic below) but it has 4 little pockets... and I placed a hand warmer in each pocket.... and wala!!! Mini heating pad... no cord! She loved it, and the hand warmers last for 10 hours... only .64 cents for a pack of two warmers!!

When we finally got to NY, we got our car, then went over to the Ronald McDonald House, checked in, they showed us around, gave us the house rules, then we had dinner. We have our own room with two double beds, TV, and our own bathroom. The house has a community living room, kid's play room, laundry room, playground outside, and kitchen. In the kitchen we have our own shelf in a fridge, and a shelf in a pantry... that's just for our stuff. There is a community fridge and pantry too, that we can help ourselves to. Every night at 6pm, dinner is provided to the house by a local restaurant or company... as charity. Tonight we had pot roast, veggies, mash potatoes, chicken, and pasta. It was really good. In the kitchen there are a lot of family tables, dinner is served buffet style, and we have to clean up our own dishes. They are very friendly here, and this is such a great organization! We only saw about 6 other families here, but the parking lot is full. We ran to Target to get a few breakfast cereals, milk, laundry stuff, and some snacks, and now we are calling it a night! Tomorrow, Kaylie just has Pre-op testing, at 9am.

Main Living Room
The house is a entertainment
Entry way into the
Children's Playroom

She wanted a pic taken!
Kitchen, its a big L-shaped

Tuesday, July 24, 2012

Down to a couple days...

Wow... July has gone by fast, and my emotions are everywhere! Monday was a good day! We collected a total of 5.5 pounds of tabs for the Ronald McDonald House Charities!!!! That is a big basket full!


Then we took half of the collection to the OKC Chapter! They were so Thankful! We will be giving the other half to the Long Island Chapter. We truly appreciate everyone for helping us collect these tabs for them! What a great cause!

I have a lot of friends & family from all walks of life, all different religions, and beliefs. Lately, I have been asked a lot if we pray, or can someone pray over Kaylie, send good vibes, send pure light. I will take it all.... I want all good for her, all the help she can get. I am Catholic, and I do pray. I may not attend church all the time.... but I also don't feel like I have to be there all the time to believe in God, and my beliefs. He knows, and I know he does... and that's all that matters. But, I also except all of the people in my life and their beliefs, and if that's what is right for them, then it is. I started a "Prayer Chain" on Face Book, this is the link to it "Here". What ever you believe in, please send it to my daughter. Send Prayers, Good Vibes, Love, Pure Light, Support.... send all good. The 27th is a very special day, it will be a great day. My grandparent's 60th wedding anniversary is that day.  It will be a long day, but a good one.

Sunday, July 22, 2012

Email Stories...

Each week I get a few emails, from all over the US... either telling me their personal Chiari story or their child's. And most, if not always they have the same story to tell me how they have had to fight tooth and nail with doctors, just to get to where they are now. That they get pushed from doctor to doctor... someone trying to figure out answers, of why they or these kids are having these symptoms. And when you finally get into the "right" hands, I know their feeling.... its this huge sigh of relief, that finally someone gets it! But just because you find that doctor that helps... doesn't mean the battles end. I just dealt with one the other day... an anesthesiologist of all ones, questioning the doctors orders for MRIs for my other two kids. And you go to explain the whole story... which takes awhile, because its a lot of info, and usually a lot for one to comprehend, and they look at you like your crazy. Because of the ordeal I had, ASAP.org sent me brochures, and other hand out info, to gives to these doctors, nurses... and everyone else we meet. And the biggest down fall.... is Kaylie will deal with this the rest of her life! That's why it's my job to make sure she is set up with the right doctors, hospitals... so as she gets older... she isn't being floated around. That was one of the reason's why I chose Rekate, who does adults & children... because she can grow with him and his colleagues ... that way, time she is 18, she isn't being pushed out of a pediatric clinic, searching for a new doctor because of her age. I wish people could read these emails I get.... because after reading so many, it makes you wonder what the medical community is missing. AWARENESS.... is the key point, and only way it's going to be heard!!!

*If you ever contact me, about your story, and would like for me to share it on Kaylie's blog, let me know. I will add it on here... to show that these kinds of stories happen all over. Names can be blacked out.... but the awareness is shown. If this does happen, I will probably make a special section on here just for that.

Saturday, July 21, 2012

Our Other Two...

Many have asked about what will go on with Abby & Mason while we are gone. I am very lucking to have my parents in my life and be so close. And that the kids are all so very close to their grandparents too. Abby & Mason will stay back here at home with my parents. I'm sure they will have a good time, as they are very spoiled by them.

Mason, doesn't really know what's going on, he is only 2. Abby, does somewhat know. She does know we are taking Kaylie back to New York, and that she will have surgery to fix her headaches... but that is it. She has asked, will she go to sleep like I did for the MRI, and will it be fast like that. I told her yes. I will not share details with her, and I have assured her that she is going to do great, because Dr. Rekate is a great doctor, and does this all the time. She also knows God is watching over Kay too.
I am a little sad to be gone from them... so awhile back when we knew Kay would need surgery, I started thinking of ways to still be connected to them while we are gone. Of course we will Skpe with them every night, but I have some what calculated the time we will be gone, and wrote Abby a letter for each day. I put together this small gift bag... that has a card on the front, and it tells her to open one letter from the bag each morning. In these letters I talk, that Kaylie is doing well, that we miss them, I talk about school starting soon... all kinds of things. Some have little treats in the letters, things like that from the dollar store. Mason... well, he could probably care less, so I just got him a few treats in a bag... and called it a day.
We get asked a lot how Abby is doing, since she is the older one, or is she acting out because there is so much attention on Kaylie. The answers are always the same... she is doing well, of course she is worried about her sister... I think all siblings would be this way. But I have made sure this summer that she has had her own special times, and that it's not always about Kaylie. She is an amazing little girl, and such a big helper. They grow up so fast!

Conquer Chiari Walk Across America

Our family will be participating in the Conquer Chiari Walk Across America on Sept. 22nd, in Tulsa, Ok. You can click here, to join the walk or 5K run. Our team is Hanging With Kaylie. Or if you would just like to sponsor a walker or runner you can there, or sponsor Kaylie here, on her team page. By sponsoring a walker/runner you are helping fund research for Chiari, and hopefully a cure will be found one day. Thank You for all your support!

Stages of Grief

Our family is going on 4 months with dealing with a chronic illness. I remember that first month, and am always reminded how far we have come when a new parent joins one of the groups I belong in. Its the same introduction, that we all frantically give. " My child just had an MRI, I got a phone call, they said it was Chiari 1 Malformation, and I am so scared." And you see these parents post lots of questions and trying to take it all in.
I truly believe we all go through the stages of grief... but not just once. I believe when you are told your child needs surgery, you go through them again. And I can not speak on any further times....because I'm still on the second round of it.
The Stages of Grief are:

Stage 1: Fear and/or Denial
Stage 2: Anger
Stage 3: Bargaining
Stage 4: Depression
Stage 5: Acceptance and Re-evaluation

Fear and/or Denial: Yes, we all think it, "not my family", "not my child".... I personally wasn't in a lot of denial, I was in the fear side of it more say. I was scared for Kaylie's future, and still am. I know she is going to go through this surgery ok.... but I worry about is as she gets older... what's to come. Will she have to have other surgeries? How will her quality of life be.... she has a GREAT life, but I think I mean, I just don't want her to be in constant pain, or dealing with these symptoms the rest of her life. It's just hard to wrap your head around the possibilities of the future.

Anger: who's not angry???

Bargaining: When I first saw this listed as one of the stages... I couldn't comprehend it. I thought to myself... Bargain with what?? But then, I thought... I have bargained. I think I bargain with God all the time. I think I even talked in one of my first post how... "if everything works out, I will dedicate my career to neuro side of medicine".... I have bargained to please let my other two children not be diagnosed with this condition. And I know I will bargain on the 27th. I don't think it matters what religion you are, we all believe something, and I think we all bargain with it. We're human.

Depression: I go through waves of it. When I hit a low, I shut down. I'm not writing/posting a lot, I am not calling my regular friends as much as I usually do. You just shut down.

Acceptance and Re-evaluation: I accepted pretty quickly. I try not to get in the low times... so I can stay strong. I accepted pretty quickly, because I personally want to make a difference. I want to help others. In the long run, this happened for a reason.... I re-evaluate everyday. To me .... it means to go back over. What can I do better for her, or the awareness of Chiari.

When I said earlier, I feel like you go through these stages twice... I feel like, when I was told Kaylie should have surgery... I went though them again.... I feel like I am still in the middle of them, and will be up and until she is released from the hospital. As it gets closer.... I can not help but worry...
We are down to days, and I am just ready to get this part over, and for her to be recovering.

Wednesday, July 18, 2012

An Amazing Night!


Us getting ready to head out to

Last night was truly an amazing night!!! It was a night filled with so many emotions. The night was a huge success... besides having so much support from all our family & friends, our community came together as one to support my daughter, and spread the awareness of Chiari 1 Malformation. I am so proud of where we live, and the caring nature of people around us. I belong to several support groups, two of them being Oklahoma based. I talk and listen to all these chiarians online, but several of them came out to support Kaylie, and was the first time I got to meet them. I was overwhelmed with emotion, because they know exactly what Kaylie is going through, and some as parents know what we are going through. I was able to talk to many of them, unfortunately not long enough... I could probably spend hours with each one of them... and one day we will. I wasn't able to get pictures of everyone, but here are a few of Kaylie & her new Chiarian friends.

Kaylie & Carter
Carter was diagnosed with
Chiari when he was 2, had
surgery March 2010
Kaylie & Mackie
Mackie was diagnosed with
Chiari when she was 5,
had surgery the same year.

Amy & Kaylie
Amy was diagnosed with
Chiari & Syringomyelia in
July 2009, surgery that same year

We can't "Thank" everyone enough for coming out and supporting Kaylie! I have to give special "Thanks" to Chick-fil-A of Moore, for hosting the event. Their team did an outstanding job!! It was so crowded, lines were long, and people parking in the grass areas.... but they handled it so well, and everyone was so patient with getting their food! We also have to "Thank" Moore Police Department for bringing awesome vehicles, their K-9 Unit, and some huge blow up, walking around mascot (which I wasn't able to get photos of!). Also to all the officers that work with my husband, thank you for coming out... even some of you made sure to stop by while working the roads! The Moore Fire Department was out, with their awesome trucks, letting the kids climb on them, and see what it's like to be a firefighter! Oklahoma City Police Department came out to support, a few of the officers donated their time and services with a bounce house and live DJ music. Needless to say the kids had a great time bouncing & rocking out!!!
I need to say: Thank You, Thank You, Thank You.... to some great friends, that were my team helpers last night. They helped by selling Kaylie's awareness bracelets, refilling drinks, cleaning tables, and making sure everything worked well last night! Thank You.... Elizabeth, Jamie, Alicia, Elizabeth (my soon to be AWESOME sister-in-law), my brother Daniel... and my parents (who have supported me & my family through everything, and especially last night watching my kids, and making sure they got to play and have a good time!)
BUT, my BIGGEST "Thanks" goes out to all the people that donated to Kaylie, and came to have a meal at Chick-fil-A..... we are so blessed with so much support! 
Sorry, for such a long post, and lots of pictures... but it was a BIG night! 
Thank You!!!










 And one last thing.... Thank You to everyone that has been collecting tabs off cans to support The Ronald McDonald House Charities. Last night alone, we collected 2.5 pounds of tabs!!!! That is a medium size gift bag full!! We have another gift bag already with about the same amount.... so that means we have probably collected over 5 pounds of tabs! That's Amazing!!! And if you have tabs, that you haven't given me yet... no worries, just need to collect them by the 22nd, because on Monday we will be visiting our local chapter in OKC, to give them half of them!!