Strength, Courage, Hope, Love, Life, Death, Angel, Butterfly

In the mind of a child

2011-08-30T18:46:00.000-07:00

Everyday is a struggle to balance it all. How do we smile everyday when our hearts are broken? Sometimes I wake up and think, I can do this, others, not so much. Thing is, we have another child that we have to function for. I can't imagine what it's like for him, he was suppose to go through life with his partner in crime. Drew was there the moment we knew Rylee was not going to make it. I fight every moment to make life as normal as possible for him. "Normal" such a funny word. Nothing about our life is "normal." Days that I think Drew is Ok, are always the days that he falls a part. This kid can go from smiles to gut wrenching crying and screaming in the blink of an eye, and just like it us for us, you never know when it's coming. This past weekend Hurricane Irene reared it's ugly head. Funny that we live in FL, but it missed us and went up the North. The Hurricane was headed straight for NY. Rylee is buried in NY in our hometown. Drew was watching the news with me, asking all sorts of questions about hurricanes when all of a sudden he started crying and freaking out. He was petrified his sister was going to wash away. Stick the knife in a little deeper and turn it. The worrying never stops, it's never out of our minds. Hurricanes are nothing compared to what we live everyday. A few days with out power, flooded houses, roads closed. That's cake, I can handle that. Can you imagine your 7 year old worried that his sister whom he has already lost, washing away!!?? When does it end? When will he see life through normal eyes? The answer is simple, NEVER! There is nothing I can do to change this. Mom's are suppose to make these things better. I can't change this, but I can be there to hold him, and wipe his tears away. We all miss her so much. Days, minutes, it doesn't matter, the loss is still as fresh and deep as the moment it happened. Shhhh don't tell to many people that, society thinks we should be OVER it. Some of our friends actually think we are ok, and moving forward. I don't want to spoil it for them. I'm not saying it like that to be a bitch. It's easier for them to think we are ok. I understand they have no clue what to do. We have lost friends, and we have gained friends. I thank and love the people who are not tired of hearing us talk about Rylee, or at least put up with us when we do( which is a lot.) A huge thanks to a family friend who went to Rylee's gravesite during the storm to take pictures of Rylee's headstone for Drew. This was no easy task as almost all the roads to the cemetery were closed. The amazing thing is through all the snowstorms during the winter, and now a hurricane, not one thing that we have put at her site or on he headstone has washed away. This is simply amazing, makes me wonder sometimes, hmm......

"I would Die If I Lost My Child"

2011-05-25T12:25:00.000-07:00

I have heard so many things over the past year. I try and tell myself "they don't know any better." Oh, how I am thankful they don't know. That is what we call innocence in the grief support group I go to. I do however want to vent about people saying " I would Die If I Lost My Child." It makes my skin crawl. It's like saying " I love my child more then you love yours." Don't get me wrong, I feel like dieing, and part of me already has. How selfish of me to do that to Drew, my innocent, sweet, albeit rambunctious 7 year old. He has already endured more then any child should. He watched his sister be so sick. I left him for weeks at a time to be at a hospital 2 hours away, he was whisked away as his sister was dieing in my arms not knowing that he would NEVER see her again. I could never do that to him. Then there is my parents. I know what it's like to lose a child. I could never choose to make them live this life. They already have to deal with the lose of their granddaughter and endure the pain of watching their child face the worst thing in the world, and there is nothing they can do. How could I do that to James, the only other person who knows how I truly feel. You will die a different death, an emotional one, but not a physical one. It will hit you, that no matter how painful it is to lose your child, you are not honoring their memory at all by dieing. I look forward to the day I die, because I will once again be with my baby girl. I want it to be when it's my time though, right now I need to be here for my son. I don't love Rylee any less because I'm still here living.

I don't have the words

2011-04-07T17:46:00.000-07:00

As usual it has been forever since I blogged. I just never know what to say anymore.

For me, life stopped. When life stops, it leaves very little to be said. I think what I'm going to try and do is go back and do different post about things we have been through or done since my last post. Hope I actually come back and do it. Stay tuned!

Janet

9 months!

2010-10-26T18:07:00.000-07:00

So much has happened in 9 months. We started a foundation called Butterflies of Hope, have held two big events. I'm a consultant for thirty-one all proceeds go to Butterflies of Hope. The websites are butterfliesofhope.org and mythirtyone.com/JanetCongero We have spent the summer traveling, did Rylee's headstone. The list goes on and on and yet, I'm still in the same place as I was 7:57pm on January 10th. Life is going on, I look like I'm living it, I should win an oscar, because it's all fake. Life has stopped, it does not move, I just act. I love when people tell me how great I look, and how well I'm doing. Cut me open, slice me in half because that's what my heart looks like inside, split forever. The holidays are looming and the cement boulder that sits on my chest gets heavier and heavier. I don't want to trick or treat with out Rylee, I don't want to be Thankful on Thanksgiving, I don't want to wake up Christmas morning to a half empty tree, I don't want this life. I don't want January 10th to come. She has been gone as long as I carried her inside me. I live for Drew. He needs his Mom and Dad. I feel like we are doing the best we can for him. His life is as normal as possible. I pray he has no clue how hard this is for us.I'm petrified of the next few months. Every night, I cry. I will never understand. I wonder if I will ever write an uplifting entry again? If I do, I wonder if it will be real or me pretending? I know it's only 9 months but, it's 9 months of not having her. Her big eyes staring into mine, head on my shoulder, hand on my heart, hands in my mouth feeding me food, dreams, just dreams. What's she doing? Who is with her? Can she eat? So many questions.

Say Rylee To Me

2010-07-08T20:01:00.001-07:00

This weekend will be 6 months. I don't know how we have made it 6 months and not sure how we will make it though 6 more. I miss her so much.

This is something that was given to us from one of the leaders of a support group we go to.

SAY RYlEE TO ME

The time of concern is over. No longer am I asked how I'm doing? Never is the name of our daughter mentioned to me a curtain descends, the moment has passed. A life slips from frequent recall. There are exceptions close and compassionate friends, sensitive and loving family, for most, the drama is over. The spot life is off. Applause is silent, but for me the play will never end. The effects on me are timeless. Say Rylee to me. On the stage of my life she has been both lead and supporting actress. Do not tiptoe around one of the greatest events of my life. Love does not die. Her name is written on my life. The sound of her voice replays within my mind. You feel she is dead. I feel she is of the dead and still lives. She ghostwalks my soul. Beckoning in future welcome. You say she was my daughter, I say she is. Say Rylee to me and say Rylee again. It hurt to bury her memory in silence. What she was in flesh is no longer with us what she is in spirit stirs within me always. She was of my past but she is part of me now. She is my hope for the future. You say not to remind me. How little you understand and I can not forget. I would not if I could understand you. But feel pain in being forced to. I forgive you. Because you could not know and I would forgive you anyway. I accept how you see me, but understand you do not see me at all. I strive not to judge you. For yesterday I was like you. I love you, will make no exceptions toward you, but I wish that you could understand that dwell in both flesh and spirit. The mystery is that you do too, but know it not. I do not ask you to walk this road. The assent is steep and the burden is heavy. I walk it not by choice. I would rather walk with her flesh. Looking not to the spirit roads beyond. I am what I have to be what I have lost you can not feel. What I have gained you can not see, and I would not have you. Say Rylee to me for she is alive in me, She and I will meet again, though in many ways we've never parted. She and her life play light songs on my mind, sunrises and sunsets in my dreams. She is real and shadow was and is. Say Rylee to me and say Rylee again. She is my daughter and I lover her as I always did.

Poem on a card that a friend sent.

2010-06-03T18:16:00.000-07:00

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable Shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.

I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.

I now realize that I am not the only one who wears these shoes.
There are many pairs in the world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by
before they think of how much they hurt.

No woman deserves to wear these shoes.
Yet, because of the shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.

I will forever walk in the shoes of a woman who has lost a child.

Author Unknown

The Words are painful

2010-05-20T12:31:00.000-07:00

Everyone keeps asking if I have blogged? I want to, but, writing is almost to painful. Mother's Day and 4 months happened with in a day of each other. The day before Mother's Day we picked out Rylee's headstone. I can't begin to explain how awful that was. In that moment, it seemed to real. The guy had to draw the whole thing out. Looking at a piece of paper that is designed like a tombstone with Rylee Bridget Andersen 2-5-07 - 1-10-10 on it hit like a ton of bricks. Why? What purpose does it serve? I will never understand why my arms were not good enough. Mother's protect their children, they make them better. On the night of 1-10 my baby looked into my eyes, crying and gasping for air and there was nothing I could do. I could not take her pain away, I could not save her. So, on Mother's Day I felt as if I had let her down. I am proud to be Rylee's Mother and I will always be her Mama. I just hate that she is not here and that I could not stop her body from failing her.

Would I choose to not have had Rylee?

2010-04-27T18:17:00.000-07:00

Shocking question, I know! When I first heard this question by another Mom who lost her child my immediate thought was HELL NO!!!!!!!!!!!!! This Mother was asked this question by a friend around the anniversary of her child's death. It struck me, because she didn't know the answer to it. Her answer was " I don't know" She said " I don't know what I would pick, I am grateful for the time with my son but, to live with this pain forever is so unbearable." She honestly didn't know if her life would have been better never having had her son. I will not judge this women, I know her pain. Her son passed away four years ago and yet, she still does not know, because her pain from his death is so deep. This was so profound for me. My answer is still HELL NO! but, I had to stop and think after she gave her reason for not knowing. She's right, the pain is so awful and it will never go away. For me, I would never trade, the laughs, smiles, tears, screams, hugs, kisses, touch, feel, smell. She was mine, and I would never give that up. I would however, do anything to have her back where she belongs.

3 Months plus

2010-04-24T18:49:00.000-07:00

It has been a little over 3 months since that awful night. I was hesitant to write about it. Society believes my life has gone on. That 3 months is long enough. People forget, or don't know what to say. 3 months is nothing, 2o years will be nothing. The gaping hole will be there forever. To society I want to say FU!!! There is no limit to grief, especially when it's the lose of my child. The days are busy, very busy. That is the only way for me to survive right now. We go on for Drew, that is not a choice. On the outside I look whole, on the inside I am shattered into a gazillion pieces. I find it hard to write this because nothing compares to what Rylee lived everyday and how hard she fought to be with us for as long as she could. I love her, it's so plane and simple I just love her, want her, miss her.

Mother's Day is right around the corner. We have to go back to NY. Part of me is happy so I can be at the cemetery and the other part of me just wants to stay here and ignore it all. James and I have to pick out the headstone. How did we get here? A headstone for our baby. I just want to scream. Friday night we will put on our happy faces and help his brother celebrate his engagement. I am truly happy for him but, dread that weekend.

Mitochondrial Disease

2010-04-19T13:03:00.000-07:00

Grief

2010-04-02T19:13:00.000-07:00

Grief is a tidal wave that over takes you,smashes down upon you with unimaginable force,sweeps you up into its darkness,where you tumble and crash against unidentifiable surfaces,only to be thrown out on an unknown beach, bruised, reshaped...Grief will make a new person out of you,if it doesn't kill you in the making.

Car

2010-03-30T12:09:00.001-07:00

Two and half years ago I joined the world of the minivan mom. I hated to admit it but I LOVED it. Anyone who has had or has one knows how much easier it is for travel, friends, car pool, space. We decided to get it shortly after Rylee was born. This is the car that we have traveled all over with, the car that we went back and fourth to the hospital, Dr's in numerous states too. The car that Rylee would laugh at or with her brother, choke, and have seizures in. The car that I would constantly stare in my rear view mirror to make sure she was still breathing, not ripping her tubes out or watch her laugh and smile. This car has so many good and bad memories. When we got back from her funeral in NY I was not sure we would keep this car. Do we even need a minivan anymore? Now, the car is where I cry. See, for everyone else their lives went on and ours have not. I have said this many times. No one wants to see us upset, or have their day brought down. In the car I'm alone. That of course is half the problem. The car is where I can release all my emotions with out doing it in front of others, the car is where I can blast songs that remind me of our sweet girl, the car is something I now hate because she is not in it. The car is something I love because I can let things out. I will cry before I go somewhere or when I leave so I don't cry while there. Do we keep this car? Do I want this car anymore? Is it what is best for us still? I don't have the answers to any of those questions. I will hold on to it for a while before I decide. I would hate to get rid of it now and decide 6 months from now I want the car that she was in with us back. No matter what car I'm in I will cry, I will look in the rear view mirror wishing she was there. At the end of the day it's not the car, it's Rylee no longer being in the physical world with us. None of this is right. This was not the way it was suppose to be. She was suppose to be the one that beat the odds of this ugly disease.

Awesome Video from Amber

2010-03-18T18:28:00.000-07:00

A friend made this for us. I can't thank her enough. It's truly priceless.

Make an on-line slide show at www.OneTrueMedia.com

Two Months:(

2010-03-10T17:45:00.000-08:00

I keep thinking it can't be two months. This can't be my life. I could not have possibly gone this long with out seeing her beautiful face, feeling her against me, screaming because she did not get her way, no Dr's or hospitals. How? Why? It makes no sense to me at all. I can't wrap my brain around it. That night plays over and over in my head and I can't get it to stop. I'm not sure that it ever will. I walk through life everyday as if we are normal, and we are so far from that. I vividly remember people talking about us behind our back, saying that we were lying about Rylee, and she was not as sick as we were saying because she looked fine. I look like I am fine, yet my world crumbled in an instant and I am far from fine. The hole is so deep and it can never be filled. Please, don't ever judge a book by a cover. I wish my life was moving forward. I wish I could join the rest of the world. I wish she were still here. On FB today a friend wrote something that she thought might help. I am so thankful that we have so many people that care for us. Thankful that she tried to help, so, please when you read this don't take offense. It was about looking back to the first day, and realizing that nothing is as bad as the first day. I could agree with those words and take comfort from them if it were not my child. A spouse, parent, sibling, friend maybe, not my child. I feel no less pain, I feel no more strength, I feel no more healed today then the first day. In some ways it's worse, the numbness has worn off and all I am left with is the reality that I will never see her, feel her, kiss her again. I cry in the shower, the car, I choke up all the time. When will it feel different? Tomorrow James and I head back to NY for his Father's Memorial. We will fly on the same plane that we flew 2 months ago to bury our daughter. We will spend two hours in the place that we last saw her, touched her. We will do it together though for his Father. His life deserves to be honored too. I'm afraid to see everyone. It's much easier to hide the pain from people who have not known us our entire lives. Afraid to go back to the cemetery and face that she is really there and never coming back. The numbness seems better to me at this point. Thank you to all our family and friends who have been there for us. Thank you for helping us celebrate Drew's 6th birthday this week. We continue to be blessed by so many wonderful people. Please continue to pray for Madelyn, Abbie Grace and Savannah.

Signs

2010-03-03T18:29:00.000-08:00

When Rylee was getting sicker, and the Dr's were not sure what was going to happen, the word death came up. It hit hard in so many ways but, instantly I thought I needed to let Karen and my family know that if anything happened, James and I wanted Rylee brought home to NY. We did not want her buried in FL. NY is home, no matter where we live and, I didn't want her to be alone. While we sat on the couch knowing our daughters life was coming to an end, I found myself second guessing what I wanted. I didn't know if I could leave her. I felt this way until we were at the cemetery. I needed signs, silently begged for them. I did not want my baby to be alone. We decided to go ahead and bring Rylee back NY. The thought of having her here was worse then leaving her in NY but, still looked for something to tell me this was right. I'm going to back track a little. In October while I was in the hospital with Rylee a close family friend suddenly passed away. I was heart broken for this family, for my parents who wouldn't leave us to be there. I received an email from Mr. Reardons daughter saying that his death had to have something to do with Rylee and that she whole heartedly believed he was another angel in heaven fighting for her down here. I wanted to believe this so much and if it helped his family to believe he was helping Rylee I was all for it. We needed all the angels we could get. I hated that it had to be someone we knew though, and that they were hurting so badly. Now to bring you to the morning after Rylee passed away. I was not taking phone calls. Friends of ours came over and fielded the phones for us. I was upstairs and Terra came up and she looked at me saying "I'm sorry but she won't take no for an answer, it's a Maryann." It was Mrs. Reardon letting my know that she wanted us to use Mr. Reardons car when we got to NY. We landed late into NY so we were not going to Locust Valley until the next day. My parents picked James and I up in Mr. Reardon's car and off we went to the cemetery. After talking about what we wanted we were taken down to an area that had space available. My parents decided to get a plot and James and I would need two. When we got to the area that we could choose from all of a sudden I started to listen to everyone saying " I don't want to be up the hill, I don't want to be in the shade, I want sun, I want some tree's" As I was listening to this all I said was "I don't want her to be alone" Everyone was looking were there was no one around. I knew James Grandparents and my Grandfather were in the surrounding areas which was good but it still did not feel right. My Dad moved over to another area and said "what about here?" then he walked over to see who she would be near and all I heard him say was "Oh my God, I can't believe this" My Mom went over to see who it was. She turned and looked at me and I said "who is it" her answer was "Tom Reardon" We just started to cry. Our baby was not going to be alone. There we were in his car at his grave site and he would be with our baby girl. That was our sign. Sadly, he did not pass away to be her angel on earth but he is her Angel in heaven. James and I took great comfort knowing that Mr. Reardon would be with her. We found out we could not put her right next to him because his son had bought the plot next to him but we bought the 3 plots after that.It was fine, he was close enough. I knew she was in the right spot, God and Mr. Reardon lead us there. My baby is NOT alone!

Heart in the clouds

2010-02-28T18:31:00.000-08:00

I just downloaded this layout and although it does not look perfect, the name of the layout is Heart in The Clouds, PERFECT!!!

Displaced

2010-02-28T18:02:00.000-08:00

Displaced is what I feel coming back here. I left here to go to caringbridge because I felt I was dishonoring Drew by writing most of my blog post about Rylee. Now, Caringbridge is not the right place either. None of this feels right. A lot of what I write will about the journey of life into death and what I'm going through but I will also write about Drew and what our family is up to. Thank you for following us and for all your support and prayers, they are what keeps us going each day.

One foot, in front of the other.

2009-10-01T17:21:00.000-07:00

Not sure how much I have to give, not sure this will make any sense but here's what I have. We ended up in the hospital longer then we thought. Our 3 day stay turned into 7 and half days, yes, I count that half day, and so would you if you lived through it. Most everyone knows how Rylee loathes the hospital and Dr's. We spend many hours walking the halls, I mean MANY!! Everyone knows us. The TPN is in and as of right now we are trying to regulate her levels. So far her weight has not really changed, still not walking and she is just plain miserable. I miss her smile, laughter, spark, I ache for it. I fear that I will never see it again. The other night I found myself going through pictures trying to remember the last time I saw it. I can't even remember anymore. I cringe everyday that she cries in pain "mama owie mama hurt" One foot, in front of the other, that's all I can think about. She spends 20 hours a day hooked to a machine and 6 of those hours she is hooked to two machines. She has a tube out of her chest and stomach. Right now it's all a lot of work. Taking care of this is so much different then the GJ-tube. I know that we will settle into a routine, and soon it will feel like it's nothing but, right now we are not there yet, one foot, in front of the other.

Thank you to everyone who has been there for us:) We have gained many friends, we have lost some who we thought we were very close to us. It's amazing how many people change in your darkest hour. Those who should be there are no where to be found(if your are reading this it's probably not you so don't be hurt by this.) Thank you to our friends who have been putting food on our table every night since we have been home, for picking Drew up for school and asking for playdates with him. You all have made our lives so much easier. Thank you for just doing it because we all know how bad I am at asking for help. Thank you to the 3 south nurses, you are amazing. Love that we have had the same nurses for 2 years. Thank you to our amazing Dr's who have not given up.

Exactly what we needed:)

2009-09-13T04:18:00.000-07:00

Yesterday was Drew's first soccer game of the season. He started off in goal. He did a great job. He is much more a defensive player then offensive. I see Daddy working with him in the goal in the near future. He will happily tell you no one scored the half he was in goal. It was pouring in the morning but the rain stopped in time for the game, thank God.

In the afternoon we went with the family and Stephanie to see Disney on Ice. My kids love anything Disney. I was a little worried about Rylee because when she's not feeling well things can go either way. They all loved it!! Watching their faces light up is priceless. Rylee kept saying "more ice" she didn't want it to end. She was clapping, laughing, sitting with all of us and in normal Rylee fashion feeding us. For 2 hours we had our girl back. I'm am beyond thrilled that we went. It made all of us so happy to see her like that, it has been a while. It was truly awesome and exactly what we needed. Drew was so excited when the cars characters came out. He loved it just as much as Rylee. Watching it through their eyes is so much fun.

A little chat about God.

2009-09-10T18:28:00.000-07:00

Ever since my leg was hurt everyone would ask us "how we got through it?" Now that Rylee is sick we are asked all the time if we believe in God?How do you get through everyday? Don't we hate God for doing this?

I'm going to answer to the best of my ability how we feel about God. First off I do not believe God gave this disease to Rylee. God does good things, not bad. I do believe God chose us to be her parents. For whatever reason he thought that we had enough love, faith and ability to handle this in the best way that we can. I believe that he is there for us everyday. I don't believe that we could wake up in the morning if we did not believe in him. There is a stronger power that allows us to live and get through everyday, and that is him. We love when people prayer for her. There is nothing more powerful then those prayers. Dr's, medicine, food are all important but without prayer and belief there is nothing. I'm in no way a holy roller. I just have faith and this faith, good family and friends it what keeps our heads above water.

Anything but this. It's time:(

2009-09-09T13:01:00.000-07:00

I want to write about what an awesome wedding James and I were just in or, about seeing most of our friends and family or, about Drew wanting to play on the big hill.

Not here to write about that though. I'm going to give an update about Rylee and Mito. I hate that mito is progressive. I hate that it has progressed. I especially hate that there is no cure. For a while Rylee has been on a downward slope. I wasn't to worried. I know that's how this disease works. We have been through a "crash" before. After 6 weeks she started to come out of it. This time though, she is not coming out of it. While we were in NY it became quite apparent that she is not well and she is not getting better. She has not walked in 6 weeks, barley gets off my lap and now can't even eat through the tube. Her stomach has stopped moving, she is in a lot of pain. When we could get her hooked up the food was coming back out the opening in her stomach. My baby is not well:(

Yesterday I took her to ACH to have her tube re-placed. They weighed her and she has lost more weight. Dr. W said it's time, there is nothing else we can do. Time for the TPN. My heart sank. This is the one thing that I have not wanted to do. All along I thought I didn't want to do it because of all the side effects. There are lots, and none of them are good. What hit me yesterday is that more then the side effects I don't want to do it because after this there is no alternative. This is our alternative. As long as there is no TPN there is hope. What if this does not work???? The up side is she will gain weight. One of my concerns is that when they take the TPN out she would just lose the weight again. She will lose it which is why Dr. W told me the TPN won't be coming out. TPN's are not meant for long term feeds. We have no choice but to take the side effects as they come and keep her on this for as long as we can. We are sad, we are defeated, we are in love with this precious baby girl and we will do whatever we have to. We are stronger then Mito and we will fight back.

The tube they put in yesterday is not working either. Monday Rylee will be admitted to put a central line in to start TPN.

Thank you to everyone for being there for us. We are so lucky to have a great friends and family.

It's a kindergarten world.

2009-08-30T04:31:00.001-07:00

Drew started kindergarten this past Monday. How has five years gone by so fast?? He loves it!! I did not shed a tear. How could I cry when he was so happy. That does not bring tears to my eyes it bring smiles to my face and heart. His teacher seems really nice and we all like her a lot. I hope the rest of the year goes as great as the first week. I only hope they improve parent pick line, it's insane. We are thinking about the bus but it does not really help us out. Our major issue is Rylee's schedule. If she were a healthy normal child I would just suck it up. We will decide in the next few weeks what we will do. If the bus stop was at our entrance and not the first, all would be fine. Since it's at the first, I would still have to take Rylee with me. The bus also gets here way to late to get her down for her nap. We have a few friends who have offered to pick Drew up for us. I will see how this week goes and make a decision when we get back from NY. All in all a wonderful start to a new school year.

Here we are 2 weeks post op.

2009-08-19T12:07:00.000-07:00

The first week and a half was rough, really rough. Rylee cried almost all day and would only let me hold her. Her hands and feet were so black and blue from all the IV attempts, her back sore and both legs, poor thing was miserable. I'm happy to say that we are now pretty happy and content but she still won't get down, walk or go to many people. She is petrified of everyone. Anyone she does not know that is around her brings on a crying jag. Oh I how wish she was not so scared of people. Everyone to her is a monster. I hear Mom's say all the time to their kids that "Monsters are not real", "it was just a bad dream." Monsters are real to her, they are the entire medical field and them some. Sad, truly sad that she is this scared, heartbreaking. We have a week full of apts this week. We are taking a break from speech therapy. Rylee hates it, once again it scares her. The therapist feels at this point we are not getting anywhere because she just shuts down. We agreed to end our 2 sessions a week and re-evaluate in 6 months. I am happy with the progress that she has made in the last year though. She has gone from a 0-3 month level to a 20 month level and she is 30 months. Still behind but not nearly as severe as before. Today we had PT. The physical therapist will only being seeing her once a month. She won't let her touch her so we are limited in what we do and that is my field so we will work together to come up with an at home plan. We were given a walker for Rylee today. This brings me so much sadness. I will do whatever we need to help her and if this is what she needs I'm fine with it. I hate that I am now looking at another visible reminder that our daughter is sick. This is not going away. The trick is to get her to use it, ha should be fun. We also had neuro apt on Monday and we have started her seizure meds. James and I just could not come to a decision on what to do. We decided to start the meds see how it goes. If she does not improve very much then they will admit her into ACH and have EEG study done. It has been total craziness.

This weekend we are going to take Drew to Disney and leave Rylee with my Mom. It's really hard to leave her but Drew needs us too. This has all been so hard on him. A little Mommy and Daddy only time should be great for him. He starts School on Monday. He is so excited. How did my boy become old enough for kinder???

No matter what Life is Good and we know that so we live it to the fullest:)

I want to thank my family and friends for all their help these past two weeks. From watching Drew, cooking us dinner, taking Drew to camp for me you all are awesome. Thank you so much!!

Gone and Back, thank God!

2009-08-10T04:35:00.000-07:00

Last Tuesday we left for GA to continue our quest of trying to completely figure out what's going on with Rylee and to figure out if there is anything we can do now for the Mito. We knew this was going to be a rough trip and it was. Wednesday was apt after apt and they did not go well. The first apt was with anesthesia which was suppose to be quick. That turned into an ordeal and a half and Rylee lost it. Rylee has a lot of issues with anesthesia and they all decided that they needed EKG's Echo's and a slew of other things. Rylee was a screaming lunatic. She hates the entire medical profession and these people and hospital were all new. This apt made us late for the next apt. Not a big deal though because the next apt she down right refused to do. I knew that she probably wouldn't do it from pictures on another persons blog that had been to Dr. Shoffner already. They put this big tube with a blanket all around you. Rylee wouldn't even let them get it down. Every time they tried Rylee would put out outstretched hands. After a few attempts and a balistic child they called it quits. Next up the wizard the wonderful wizard of OZ. Dr.Shoffner was next up. I was well prepared for his type. I had talked to Amber about her visit, Dr. Warren is no different and I worked in the medical field. He was much better then I expected and Rylee was much worse. She was pulling her hair out, my hair out, throwing things, screaming and hitting. Dr. Shoffner dealt with her great. He knew it was a long day and that this was only because she was so upset. He had to stand across the room and leave the door open and every once in a while she would give us a moment of peace. I knew that Dr. Shoffner would not be giving us many answers. He likes to run all of his test first. That means 3 more months of waiting. He said that there is definitely something else going on because her weight is so low even for mito. With the gj-tube and all the calories she gets she should weigh a lot more then 13pds 11 ounces and be longer then 28 inches at 2 and a half. We discussed the TPN and he wasn't really excited about it. He said that she would probably gain adipose tissue but not muscle and skeletal growth which is what we really need. Fat tissue would hurt her not help her. Thursday was surgery day. At first we thought we were staying over night because of the anesthesia. Last minute they decided to change how they were going to do things and that we would be able to go back to the hotel, woohoo:) Everything went well. Poor Rylee is miserable though. They had an awful time getting an IV and blood so 10 attempts later, 2 bruised and swollen feet, 2 bruised and swollen hands they were able to get one in. They could get the blood from where the IV was so they had to get it from the femoral artery on the non-surgical leg. The lumbar puncture took 2 times before they were able to get. All of this equals one sore miserable child:( It's so hard to see her like this but, I know it will pass. As everything else we are going through one day at a time. The only good thing about waiting 3 more months is we get a little break from the medical world for a bit.

First Road trip of the summer season was to SC.

2009-07-26T04:42:00.000-07:00

I love me some travel:) Last year on the way back from our NY road trip we stopped at my Aunt and Uncles. Drew has been asking to go back ever since. We left on a Sunday and stayed until Thursday and then headed to Seaworld. We had a great time visititing, wine, ice cream, butterflies, beach, horse riding, Sue and Pauls( they are the sweetest people and their house is heaven to me,) golf cart rides, corvette rides and just plain ol hanging out. Uncle Frank is happy to have his TV back:) He's not much for Noggin or sprouts. He is more of the fall asleep in the chair with the remote type guy. Don't you dare try and touch the remote while he is sleeping. He is so much my grandfather it's scary, love him. A good time was had by all. Thursday we headed to Seaworld. Rylee loves fish, dolphins and whales. Perfect place for her and Drew had not been in a while. Both kids were happy as clams. In the words of Rylee " I want more" "I wanna go back see dolpin" It's fun seeing her show interest in something. Drew was so happy that his friend Bryce who had been at Disney met us for the day. I love that we are doing more this summer. After our road trip last year Rylee ended up in the hospital for the rest of the summer, not fun. I feel like we are doing so much lately, it has been so long since we have done all these things. As soon as I think we are adjusting Rylee has a few bad days. It is so hard for her to keep up. I'm working on my balancing skills. Fun with down time for her:)

The best news of the trip was Dr. Shoffners office called while we were away. We were not sure if he was going to see her since all he does is diagnose and she has been already. He agreed to see us because the report is requesting more tissue. We leave the first week of August.

WOW!!!

2009-07-05T17:23:00.001-07:00

The last blog update caused a little bit of an uproar. Let me start by saying that I don't write anything that is geared towards people who I know read this so please don't take offense. This blog sometimes is a way for me to vent and let it all out. By the time you read this, I'm usually over what I wrote about. I don't mind people asking me about Rylee, please do. I have no idea what the response will be but, whatever it is that's where I'm at that day so don't hold it against me:) Are you happy Mom???????

On to other stuff. It has been such a fun summer so far. We have spent time with our friends who we don't get to see as much during the school year. Drew is loving just hanging out everyday. It is a little rough for Rylee. She needs a lot of sleep but we are doing the best we can and so far not so bad. Tuesday Rylee had an apt with Dr. W. She lost a little bit of weight:( and her site need to be cauterized, yuck. The great debate of putting a TPN in is full force. I'm so torn about this:( Time will tell as to what we do. This will be one of the hardest decisions we will have to make to date. Drew got to stay at my parents while we went to the Dr's. He loves playing golf in Papa's golf course and playing ball on Papa's ball field. So nice for him to get to do what he wants and be the hot shot. This lead into 4th of July weekend. Our friends texted us about going to see fireworks at miromar last minute and I decided to pack the kids and go. I knew this would be difficult with Rylee and the tube but James and I made it work and Drew had a blast with Jason. Thanks Leah for the invite. I know we can't always go to things but are thankful for the invites. My fav was Lucinda's rocking head piece. On the 4th we went to the Sanibel for a bike ride then on the beach for a few hours. When we got home it was a quick swim in the pool, BBQ and packing. Today we left for Hilton Head to see my Aunt and Uncle. We made it here safe and sound and are looking forward to spend a few days with them. Drew has already hit Uncle Frank up for a golf cart ride.

My FIL in back in the hossy wishing him well and hope that sometime in the near future he can finally get better:) and my MIL can get some much deserved peace!!!!!!!!!!!!!!

Judge Dread.

2009-06-28T19:48:00.000-07:00

Tonight I was talking to a friend who said she had heard that everything was not "fine." She was a little upset that I told her things were fine when they were not. It is the dreaded question of "How is Rylee??" We are judged relentlessly on the answer to this question. Truth be told, I don't know what the right answer is. I sense that people don't really want the truth or don't really want a long drawn out answer. I have blogged about this before. There are times that I just don't want to get into it and there are times that people are asking out of politeness. At these times I say things are "fine" or "we take it one day at a time" because I really don't know what to say. Here's the deal, nothing is fine, nothing will ever be fine again. We hardly ever have a full day where things are great or even fine, that's the real truth. We are trying, and doing the best we can. Sometimes we are barely staying above water and others we don't tread as hard but hardly ever have a day that is truly fine. I refuse to accept this is our "new" normal and most days are not fine. There it is out in writing for everyone to see. This was not an easy post for me but this is where we are at. This does not mean we don't have fun because we do, we make the best of what we have to deal but if everyone knew the real truth about what life is like you would probably run for the hills. It's the little things that keep us going. In a way I am thankful that we understand to appreciate the small things and not take those things that people over look everyday for granted. Life is not that bad and I wish everyone could see that. Step back and enjoy what you have.

Pre-K Graduation for Drew

2009-06-25T06:27:00.000-07:00

Wow is all I have to say. I remember sitting at gymboree with Drew when he was only 6 months old and everyone talking about being on a "list" It was insane!!! It was almost to the point where we considered moving somewhere that did not have "list" for nursery school and school choice or having to change your religion to get into places. I am proud to say we made it through both. I honestly can say we could not be happier with our decision to send Drew Temple Judea. For us, and I know there will be people to debate this, Temple Judea is by far one of the best Pre-schools here. Everyone knows our saga and in the midst of life changing events they were there for Drew in every way that he needed. I could be at a hospital 2 hours away and not worry one bit about the care he was getting there. They went above and beyond anything that I would have ever expected. If you live around or near Fort Myers I highly recommend this school. They will love your child as if they were their own, they will except your child no matter what their limitations may be, your child will be safe in more ways then you could imagine. We are sad that our time with Drew there as come to an end and pray that Rylee will be able to attend in the fall. There is NO where else that I would send her.

Janet

Late is always better then never, Jamaica.

2009-06-19T13:37:00.000-07:00

Jamaica feels like a lifetime ago but that's where I left off and promised I would go back. First I want to start off by saying we had a great time. With that said, I will do my best to try and explain all that happened with out the intent of making it sound negative. We needed this week, we needed no Dr's, therapy and the constant reminder of our daily life. It was a wonderful week. It was so amazing and sad at the same time to see Drew so carefree and happy. At one moment during the trip I started to tear up because the realization hit me that I have not seen Drew so happy and free since Rylee was born. He was just having good old fashion fun. I ache for him to have that life everyday again. I love that he was able to have it again for a few days. There were a group of young guys that included him in their daily volleyball game. I don't think those guys realized the impact of what they were doing. I wish they knew, and thank them for allowing Drew to feel like "one of the boys" Now on to Rylee. Rylee was not having a great few weeks. She had a really rough six weeks. It was flat out awful, no sugar coating it. Our trip was at the end of the really bad stretch. She was not great but at least not at her worst. She never went in the water the entire time. However, she LOVED to feed the fish. I wish she was feeling better. I know this is going to sound crazy but until this trip I never thought that we had a child with "special needs" I know, totally crazy but I didn't. I now do, and things are forever changed. We had to get all the clearances to travel with all her supplies, not an easy task. I was pleasantly surprised when all went very smoothly. You all know that us and smooth don't usually go together so I of course am waiting for the ball to drop. It dropped and exploded the next day when her tube broke. I mean almost beyond repair. We had to call the emergency line at ACH and have them call Jamaica. Our options were very limited. We could pack it up and go home one day into our trip, take her to the Jamaican hospital or feed her with the G-tube. We opted to feed her with the G-tube. Not the smartest idea. The tube was to thick and heavy for her and she was in severe pain and started to bleed pretty bad out of the opening in her stomach. This was not going to work. Thank God we know the people there and they went out and bought us multiple types of glue. James was able to fix it well enough until we got home. We love this place and had a great time. We can not thank Lucio and Pinky enough. If I could only figure out way to let them know what it means to us to be able to get away from it all.

I needed to know and now we do.

2009-05-20T18:52:00.000-07:00

This has been a long journey that I wish had a different outcome. Monday Rylee was diagnosed with Mitochondrial Myopathy her biopsy came back positive. Part of me is relieved that the testing and wondering is over. The other part of me is heartbroken, there is no cure. Those are hard words to swallow. We have started her on coQ10 and carnitine. There is no proof that either of these does anything. Hopefully it will slow the progression of the disease. We also learned that the non-breathing episodes are probably seizures. We have to decide if we want to go back in to do more EEG's in a sleep lab to determine if these are also happening at night time. For two years I have been holding out hope that she will start to gain weight and things will turn around and this would just be a distant memory. Those feelings got me through the day. Now I feel as if that is gone. None of this is easy. Please pray for our family. Sorry this is so short but this is all I have to give right now. I hope to come back and update more in the coming weeks. I will definitely update about Jamaica later in the week.

Spectacular Tuesday

2009-05-03T04:01:00.000-07:00

Another Sunday and here I am. I'm pretty happy with myself that I have been sticking to my Sunday morning blogging updates. The days have been long lately. Rylee is not a happy camper. Thank God for Tuesday, she had an amazing day. We started the morning off in therapy. I decided to bring Drew with us since it's before school. They both loved it. Rylee spoke the most with Drew there then she has in the last 8 months combined. After therapy it was off to drop Drew off at school and take Rylee to Mommy and Me. We usually just barely make it through Mommy and Me but this time she was laughing like crazy, singing, cooking, painting and best of all loving it. Oh, and dare I forget that we went through therapy and class with out the beloved paci. I was one happy Mama. The entire day was filled with happiness. For a moment I forgot what all the other days are like. I needed Tuesday more then I can express. So this week, I am thankful for Tuesday. For this week we were Tuesday people.

On another high note my FIL came home. I hope and pray that they keep everything in check.

As for the rest of the week, it was not our worst but not our best either. Rylee has had 4 not breathing episodes. These are heart stopping gut wrenching moments. I fear that one day I won't be able to get her to breathe again or that it will happen in her sleep. At least James was with me 2 out of the 4 times. I'm usually alone when it happens.

I have spent a good part of the week on the phone trying to square away our travel plans. Traveling with medical equipment and liquids requires a lot of Clarence from the airlines and TSA. I have crossed all my T's and dotted all my I's. Hoping we get through security and on the plane with no problems. It would be so nice to fly once with out any issues. I always have issues because of my leg. With all the metal in there and the fact that I can't bend it takes a lot of explaining.

Swine Flue,I was mildly concerned about this as we are going on a plane. I have been told by all of our Dr's that we should still go but to take precautions. The media tends to blow things out of proportion. I wonder how many cases we have already had of the swine flu this year but didn't know it because they were not testing for it?????????

Drew's getting closer and closer to the end of Pre-K. It is crazy that he goes to K next year. He has a had pretty good week. Friday we had a play date with some friends from school and he had a blast. Yesterday was his last soccer game of the season. I'm not sure if he will play next season or not. He really wants to do baseball. I hate for him to drop out but his passion is really baseball and he is good at it. If I wait any longer to put him in it then he will fall so far behind the other kids.

Oh well, I hear "Mama" "Momeeeeeeeeee" through the monitor. Hope everyone has a great week.

Week in Review

2009-04-26T04:08:00.000-07:00

It seems that I get here Sunday mornings to write. James is at work and the kids are still sleeping, perfect time. This will hopefully be quick because I need to get us all ready for the beach in a few. Love the beach, it's one of my happy places.

It will be no surprise to anyone when I say I could have done without this week. Rylee has not been feeling well at all. Everyday has been pretty much miserable since we went to wannado city. I love her, and feel so awful for her but at the same time it's so hard for me too. Almost everyday of just crying all day or just wanting to be held. I feel like the worst Mom. I want to be there for her but sometimes I just want to scream ENOUGH. Enough for her and enough for me. How awful of me to feel that way. Usually she has about 3 bad days then a few good and I deal much better. This time for the exception of one good day and a few various hours it has been weeks. I hope we turn the corner soon. I just want her to be able to feel good and have fun. I just want her to be two.

On Monday James Dad was taken to the hospital and ended up in the ICU. Not sure who knows what so I won't get into here but he has been pretty sick. Yesterday he finally looked better, hoping that continues. The only good thing about him getting sick is that Drew gets to see Uncle John. He does not get to see him often. On Friday John decided to stay and surprise Drew and go to shabat. Drew really needed this. Things are so hard for him and this was all about him and he knew it. John and I don't aw lays agree on things in life but I thank him for doing this.

Thursday we found out that not only is the insurance company no longer going to pay for Rylee's tube or food but they now denied her for therapy. I can't even get into how angry I am. We are appealing it so please pray for us that we will win.

Thursday night was bunco night, Thank God. Love bunco night talking, games, drinking, eating what more could I ask for. I really needed to get out and hang with the girls, thanks everyone for a great night.

I hate being Debbie the Downer but no matter where I go or what I do, I talk about Rylee. I know people are not interested and are over it. It's really hard to not talk about something that is so much a part of your life. I get that other peoples lives are filled with many other things and are tired of hearing about it. The next time someone makes a comment about our lives or not wanting to talk to us because of our situation don't make it so I can hear it, thanks. All you have to do is remove yourself from our lives, you won't be the first. Sorry to vent here but it is what it is.

Now on to happier things. I need to go so I can get ready for the beach. Love spending time with the family. I thank God everyday that my kids have a love for the beach like their Mama:)

Sweet Babies

2009-04-19T12:32:00.000-07:00

Two post in a day, that's a lot for me. During our vacation I took pictures of the kids sleeping. Love pics of sleeping children. No matter how bad the day has been, they always look like angels at night. For the longest time Drew just slept with his hand sticking out of the blanket. Like father like son. Rylee has the plethora of pacis surrounding her, likes 3 south nurses, love you gals. Remember I'm coming to you when it's time to break this habit. The cord coming out of Rylee is her feeding tube. The best and worst thing. She knows how to get it a part and how to turn the machine off. This truly makes life really difficult. On the other hand when she does not play with it, it gives her the much needed calories.

Staycation!!

2009-04-19T04:07:00.000-07:00

Spring Break started last Thursday and it has been non-stop since then. Thank God most of it has been fun. We did some day trips and one overnight trip. I also took Drew out of school one day to go to Wannado city, thanks Leah, Lucinda and Terra. This was their birthday present to Drew, what a great idea. It's the coolest place!! The kids have to go to work to earn money, they can be firemen, dentist, police, EMS, Vet, Publix worker, Chocolate maker and the list goes on. I decided to only stay until 2. Rylee was with us and would not have made it much longer plus we were having issues with her tube that day, again. Since it was a year pass I didn't feel the need to make the day jam packed because we will be back this summer. The best part is when they work they earn money to go to the movies, get their nails done, go on rides etc.... Lots of fun and highly suggest it:)

Thursday was the day spring break really started for us and we started the morning off at Monkey Playhouse and the afternoon at Naples visiting with Karen Devine and fam. We had a great time. The kids went swimming, on an Easter egg hunt and of course a pinata. This was also a birthday party for one of their friends. Fun was had by all.

This was also the day that we also got awful news. Our insurance company dropped Rylee's diagnosis and will no longer cover her tube stuff or food. James and I were irate, hurt, in despair, literally sick over it. We are fighting it with everything we have but it looks to be a losing battle. Please Pray that things turn around.

Friday started off with more bad news( nothing to do with Rylee) something to do with a family friend in NY. I won't write about it out of respect for them but it hit home for our family. I know that you read the blog and just want you to know that you are in our prayers and we love you. God will give you the strength to get through this.

Now on to the happy part of the day. James stayed home with Rylee to give her a break and I took Drew and his friend Hailey to captiva to see Jeannine, George and their family. I always have a great time visiting with them and miss Jeannine so much. I'm thankful that they come down here twice a year and I get to see them. The kids had so much fun playing in the water and sand.

Saturday we packed up all the bikes and headed to Ding Darling for a bike ride. Not everyone had a great time because the first 3 miles was on gravel and it was hard, not to mention the rocks flying at me of off cars, thanks Sean for trying to cover me. I had a great time, could have done with out the gravel but other then that it was a great ride. The kids were in the trailer and loved it too. Only major downside was that with the gravel the trailer bumped around a lot and the straps must have rubbed against Rylee's tube and irritated the crap out of it. The next 4 days sucked for her. I almost ran her into the ER Monday night.

Sunday was Easter!!! It was a nice relaxing day. James works on Sundays so he is never home for when the Easter Bunny comes:( The kids had so much fun getting their baskets. Rylee napped and drew and I just hung out. My parents got here around 2 and everyone else got here around 4. Every year the Easter Bunny comes back after nap and leaves eggs all around our yard. Drew and Stephanie have gone on an Easter Egg hunt every year together since they were born. It was so great to have Natalie and Rylee tagging along this year. After the hunt the Tedds had dinner here with us. All we did was BBQ. It was layed back, relaxing and fun.

Monday we had to go to Tampa to pick up some food for Rylee so we decided to go to Lowery park zoo since the passes my Mother got us would run out at the end of the month. We love this zoo, perfect for the kids. Rylee got so excited to feed the fish and goats. Drew had is normal fun of riding the camel, feeding the giraffe, goats, fish and riding the horse. My parents left to go home and Robyn and I went to the hotel with the kids for a quick nap and and dip in the really cool kids pool. I was worried about the hotel room because my kids always have their own room. It went surprisingly well.

Tuesday we were suppose to go to Busch Gardens, Robyn had bought passes for Drew and I for our birthdays. We woke up to pooring rain, thundering and lightening. Not a good day for BG's. Go figure, it has not rained in FL for months. Time for plan B, aquarium and Friendly's. We have no Friendly's around here so we took Drew to one off 75 on the way home. It all worked out fine since Rylee was miserable from her tube.

Wednesday we went Tumblin Tot's to burn off some energy. It's an indoor gymnastics place and the kids get to run around like nut balls.

Thursday was a little bit of a messed up day. We were suppose to have a playdate that got CX'd. This made for a somewhat long morning. We had to stay home because we finally hired a cleaning person. I guess I realize after two years that Roxanne is not coming back:( I have put it off long enough. I hate having a cleaning person, for whatever reason it makes me feel weird. I should be able to do it. I pride myself in the fact that I have been doing it for two years with a sick child, two bad legs, bad back and one bad hip. I know so many people who don't have half those issues and still have a cleaning person. No offense to those people they do what works best for them but I'm just happy that I did do it. Unfortunately with all of Rylee's apts and my recent leg injury it has become increasingly difficult to do the major things. The jury is still out if I will keep her or not. I don't know if I was not totally happy with her job or if it was just because she's not Roxanne. I will give her a few more trys before I figure that one out.

Friday James had Daddy time with Rylee and Drew, my Mom and I met Rhoda, Amber and Mattie at the beach. They had a great time. I love that we live so close to the beaches.

Saturday is soccer day. Drew played a great game. He just needs more confidence.

That brings us today, last day off. We are going to shell point. They have a great 2 mile walk along the water. We always see tons of dolphins and manatees. I can't wait, love going there and it has been a long time, probably close to a year.

Tomorrow back to school. Had a blast, wonder what the summer will bring.

Super Duper Trooper.

2009-04-01T11:52:00.000-07:00

Last Monday Rylee had a muscle biopsy and a larynoscopy. We had to be there by 7:30 and surgery was delayed for a few hours. Not Good!!!! That means a few extra hours of trying to keep her happy, eek. Thankfully everyone knows us and knows how she is and trys really hard to make it as comfortable as possible. After a while of crankiness she gave up and just layed on me. I love those moments when she just lets go and is all lovey on me. Finally we were taken back and I had to hand her over. One of the hardest things a parent will have to do. Giving her to someone I don't really know trusting that they will return her to me just fine, so hard. Off to family waiting I went. I sat there just pondering how we got to where we are and wondering how we will ever get out. Rylee has been through so much and I just want a happy ending. She came out of surgery ok. We had to spend the night because she always has some sort of reaction afterwards. All in all she did well. The incision is a little bigger then I expected and she wouldn't walk the rest of the week but all in all not so bad. Now we just wait! Ha, I'm so not good at waiting, not a patient person. This will be a test for me. It amazes me how Rylee takes the punches and keeps going. She is a fighter and I admire and adore her for it.

The story of our lives!

2009-04-01T10:39:00.000-07:00

Two weeks after Disney we had Drew's birthday party. All year long we have been hearing about how he wanted a pony at his party giving rides. The entire party was based around the damn pony and the party had to be changed do to a schedule conflict and we had to find a new Pony. I was so happy that we had one coming and not only would there be a pony but goats, ferrets and bunnies to pet too. I totally go over board for Drew's birthday because of everything else going on. This is all about him. Pony is suppose to arrive at 12:30 well 12:30 comes and goes, 1:00 comes and goes. James and I are furious and we have one very upset little boy. We are frantically calling with no answer, are you freakin kidding me!!! Finally the guy calls and he is in the hospital. They were in an accident on the way here and the driver was in the hospital and the pony is DEAD!!!! No, really this not a lie, although it did cross our minds but we requested the accident report. This is just how our life rolls. If it's crazy and nuts it happens to us. Oh well it adds color to our life. After a few meltdowns and "I hate my birhtday party" moments all was fine. I felt awful for Drew though. I just wanted him to have this for him and it be perfect.

ACH, Disney, My Baby is 5, ACH.

2009-03-12T07:19:00.000-07:00

As you can tell by the title I am lumping a lot together. Before I get into the medical Jargon, MY BABY IS 5!!!!!!!! Oh my!! Birthdays are always a big deal in my family but this years birthdays were especially big. With everything that has happened we really try to make Drew's birthday extra special. One of his favorite places in the whole world is Disney. This boy has a love for Mickey. We left Thursday and stayed until his birthday on Monday. On Friday we went to Blizzard Beach it was a free promotional thing and we figured we would use it since we have never been, both kids including us loved it, great for kids. The entire weekend was about Drew and what he wanted to do. We all had a blast. Monday on his birthday he got a birthday pin and giftcard for 63 dollars from Disney. Drew was in heaven. The boy loved to pick out whatever he wanted. Thank you Disney for doing the birthday promotion you literally made my sons day. This trip marked the end of our endless trips to Disney. One, we( the adults) are a little bored with it and two, Drew starts school next year, so we can't just take him out whenever. It was a wonderful weekend, so happy we went. When we got home we celebrated with just us. A little different from the norm but most of the fam was with us in Disney and we were all tired. Wednesday I made cupcakes for school, yum. Next weekend will be his birthday party. I was going to do a carnival theme party but the organization of it with everything else going on has somewhat gone out the window. I figure the kids won't really notice and there will still be pony rides, animals to pet, face painting, tatoos, popcorn machine, pinata ect.... enough to keep everyone happy.

On to the ACH portion of this post. After much discussion and many things that are happening with Rylee we are going to go forth with the muscle biopsy. I met with the surgeon on Tuesday and loved her. Most know how picky I am about Dr's, it is really hard to please me. I really was comfortable with her though. She will have it done on 3/23 so please pray for her and our family.

Janet

Choclolate!!!

2009-02-26T12:39:00.000-08:00

Ok, so most everyone who lives in FL knows this, but my family and friends in NY don't. Rylee LOVES to walk around with food. We know that she can't eat it but she will hold onto food all day. The food of choice lately always seem to be something with chocolate in it. Most everyday I have chocolate on my face or clothes compliments of my daughter who thinks it's hilarious to decorate me. So if you pass me and I have food on me, now you know why. Of course, Drew only fuels this by finding more chocolate to give her because once again it's funny.

TWO!!!!

2009-02-20T19:46:00.000-08:00

Ok, so not going to promise more post or apologize for not posting. Sometimes I find it easy to come here and others find it really hard to write. So, I will be here when I can and disappear when I want to. I guess that's the perks of it being my blog. I really wish I would write more, we will see.

I can not believe Rylee is two but on Feb 5th she was. A day of mixed emotions for me. Oh, how I am so grateful that she is two and she is here. Of course you can sense the big "BUT." I can't help but be a little sad and cheated. I feel like we have missed out on so many things. Nothing has gone as it should, and we will never get those days back. On the other hand, she is TWO!!! I posted a status update on facebook a day before her birthday that I was sad. Of course I got all the replies of "just be happy that she is here." God help me I am beyond grateful, but in all this craziness It is only natural for our family to be sad. I don't express many of those moments so when I do I need to be able to just have them. It in no way means I take for granted that she was here for her second birthday. I was so sad that my beautiful baby girl could not eat her cake. This child loves food. I want to sing happy birthday cut her a piece and happily clean up the mess. As you all know this would not happen. I am sad that two years later we are in no better a situation then we were when she was first taken to ACH at 5 weeks old. I'm just plane sad that my child does not know a life with out Dr's, therapy, hospital stays and tubes being put in and out of her, that she spends about 18 hours a say hooked up to a pole. For that moment I just needed to be able to feel the way I did.

Now I will tell you how great her birthday was. It was quiet and small and perfect. Her brother opened her presents because she could care less and we did have cupcakes and she did awesome with it. She was of course a little upset but on a whole not bad at all. We had a party for her that Saturday. I will not write about all the medical drama that was going on I will save that for hopefully another post. Due to everything happening we were not sure how she would do. All in all she did really well. We could not put her down the entire day but that was ok because she was happy. We were happy to be holding her. For the situation we could not have asked for a better day. Thank you to all of you who were here to help us celebrate. Hopefully this year will bring many happy moments but we will also allow the sad ones.

Janet

Reflecting

2009-01-10T04:51:00.000-08:00

Ok, so I know I owe updates but for whatever reason I just have not been able to come here and write. I will give a brief update as to what happened to us the at the beginning of the New Year, then I will hopefully come back to do all the post I wanted to but never did. This post will mostly be about this past year.

New Year's eve Rylee's pump started to beep saying "No Flow" now this happens and usually there is a kink some where, we could find none. James and I just kept playing with it trying to get it to work, it was a no go. We had to turn the pump off, that means no food. The next night we looked at everything and all looked fine so we hooked her up and left the room. Once again "No FLow" now are stumped. It looked as if there was a leak so we switched the tube, still not any better. I was so upset because this means she is getting nothing. For the first time I called the emergency line, never do this not even when she stops breathing. We were told to that basically she would need to have the tube done again. We tried a few things at home to help but nothing worked. Tuesday we had to take her back in to get another removal replacement. She went 5 days with almost no food. You know what that means, weight loss:( All seems ok for now, still having a few issues with it and I hope we get those figured out.

Ok, on to the real reason for this post. We have been sent many " wishing you a better 2009 messages" Now I appreciate these wishes and know they come from the best of intentions and I also hope we have a better year. Here is the thing though somewhere in all this craziness people forget the good times. 2008 had good times for us too. I have learned that you need to make lemonade out of lemons. There is no denying that we have it rough,to be honest I think I have had it rough since I was 16( most of you know the history.)Life is what you make of it. I can sit here and decide to crawl up in a ball or I can say "ok this is our lives and it sucks but that does not mean we can't have good times." Sink or swim is my motto and for as long as I live I will choose to swim as hard as I can no matter how tough the current can get. I want the happy memories too. The only way to have those is to make them. I love when people call me to complain about their lives and somewhere in the conversation I always here " your the last person I should complain too" No, call me I am here for you. I rarely listen to people and think their problem is not just as big as mine. At that moment in their life it is the worst thing that they can imagine. Call me, it takes my mind off of our lives. I wish so many things for 2009 and I know not all of them will happen but I will be thankful for what ever we are given. This year will start off much as the same as last year but I promise you for all the bad there will be good. We are blessed in so many ways I want to remember those times. So, thank you for the wishes, I just don't want to lose sight that our family laughs as well as cry's.

cathcing everyone up:)

2008-12-22T18:53:00.000-08:00

Wow, lots going on but only going to do a quick update. Disney started off with a morning trip the doc in a box for Drew. He also had an E-infection. A little late but never the less we hit the road. We were so excited to get away for a bit, we needed a break. The first day was ok but then we found out my FIL was in the hospital in renal failure. We toyed with idea of heading back but after talking about it, we thought for Drew we needed to all stay and there was not much we could do anyway. After a week and a half in the hospital he is home and doing much better. It was a crazy 2 weeks. Rylee did well the first day and that was it, she was pretty miserable. The food they had her on was not doing well with her system. Yet again we had to switch her. We saw neuro on that Friday and we were told to see Gastro again and then they would talk. Her weight is up a little and that's great. Since the conversion she has gained and hopefully with the right food she will continue. I know she is no where on the charts but I will be happy if she at least follows her own curve. Basically at this point we have to decide how much further we want to take this. Lot's for James and I to talk about. I'm a need to know person. We are busy getting ready for the holidays in between all the hospital visits, Dr's, therapy etc... I really want to get into the x-mas spirit it's just not always easy. As a kid I loved the time leading up to x-mas, now, It's after when I have time to sit and relax and enjoy it.

I know this is brief and I'm leaving large chunks of what's going on out but this is all I can write now.

Janet

Plans are a thing of the past. I have come to terms with this.

2008-12-04T12:17:00.000-08:00

Ok, so I am very thankful that Thanksgiving went so well, and that's where it ended. When Rylee has surgery that reacquires a tube down her nose for whatever reason you can almost guarantee a runny nose and cough that has been known to turn into pneumonia. Saturday morning when she woke up I just knew that once again we were going to go down this road. Of course this is also the day I'm having a holiday open house for Mary Kay. I quickly call her peds office and they call in a script for albuterol and we start nebulizer treatments. Can this girl catch a break????? NO!!!! We have been having problems with her port site for quite some time now but Monday night was awful. I went to the gym for the first time in forever and when I got home James told me she had been screaming the entire time. She cried from 6:30 at night to 8am the next morning. Now, I think it's the tube because she is trying to pull at it and just plane miserable with it. I call the peds office again to see if they can order a KUB but got no phone call back(that will not happen again, Dr Jones and I had words about it.) I then called Dr. W up in St.Pete they called the order into health park and off we went. The KUB came back fine but she was still miserable and holding her site area. We were told to either get into the ped right away or we would have to go up there to be admitted for test. I called the peds office back and demanded to be seen. We were seen at 6:45 at night and did not get out until 9:30. Turns out she had a raging ear infection. Dr. Jones told us she won the prize for the worst one he has seen. Poor thing was pulling at her tube because she was in so much pain. Well pulling at it irritated it so badly that until today she would not let us get to it to feed her, not good. We are loading her up on calories now. Of course this week is busy for us. I hardly ever make plans in advance anymore. It's just to hard with Rylee. Well Monday I had two facials to give, Wednesday an open house and conference, Thursday James and were so suppose to have us time and go to a Jason Mraz concert in Tampa and pick up my new bike, so excited. Well, it's Thursday and I'm home while James is in Tampa. It was going to be hard to leave Rylee sick and my Mom ended up with an eye infection. I'm a little bummed but I totally never get my hopes up to do stuff anymore, it's just the way our life is now. I'm happy that James got to go with my Dad and thrilled that they will pick the bike up tomorrow. I may actually be able to ride a bike with Drew tomorrow. I have dreamed about this day.

Sunday we are suppose to leave for Disney so keep your fingers crossed for us. We are looking forward to 5 days of no Dr's or therapy, just enjoying the "happiest place on earth" Our week will end at the Neurologist office on our way home in St. Pete. Please wish us well, this is a very important apt. Hope everyone has a great and happy week. I will try and update from Disney but no promises.

Enjoy the holiday season. I don't mean go out and give 10,000 gifts but to enjoy the decorating, music, festivities, family, make memories because that's the best gift of all.

Janet

Thanksgiving:)

2008-11-28T18:16:00.000-08:00

Ok, so it's really hard to put this day into words. Thanksgiving means more to us now then it has in the past. I know it shouldn't, and we should never have taken anything for granted but lets face it, we all do, I still do. I wanted to spend this day with family. I wanted everyone to sit and watch my kids play, yes kids. Not just one but 2, our beautiful, loving, full of energy son and our strong willed pint size 21 month old who is here. She, is here:) It has been a long hard road but on this day we were just us hanging out loving life. We were so lucky to have had my Aunt and Uncle come into town. Drew was beyond stoked that they were coming, very cute. I really wanted this day to be upbeat but while we were all siting to eat, it dawned on me that she may never have a Holiday meal with us. How awful for her to have to watch us and never be able to eat with us. I can't fathom that. I don't want her to have to live that way. I tried not to think about it but it was with me the rest of the night. I also realized I can't change it so I needed to be thankful for their, laughter, smiles, tears, tantrums, attitudes. You see most people complain about the bad days. Don't get me wrong, I do to but I also remind myself that all of it makes my children who they are and they are pretty special people. Love your family, hug them a little more, kiss them more, tell them you love them more. Don't take the small things for granted because no one knows what tomorrow will bring. The day did not go as I planed in a few different ways but we were all here together and that's all that matters. I love my family and was so happy to spend the day with them even if Drew spent the entire day in his PJ's. Like father like son:)

Thank you to everyone who stopped by to see us. No words were needed but we know why you were here. For all the people that called, thank you. I'm sorry we did not answer the phone but we decided that we didn't want to waste the day talking on the phone and not being present with our family. Your thoughts, prayers and love were much appreciated.

Keeping you up to date:) Or at least I'm trying to.

2008-11-24T13:21:00.000-08:00

Friday went well but Rylee is miserable. I know this will pass but for now it's no fun. I'm so tired of her always feeling like crap. James and I were talking about it this weekend and what's the worst part for us is that we feel like she probably has never had a day where she feels great. How awful that at 21 months old she has never not been sick. Please don't take things for granted especially this time of year. Cherish what you have, we do, and look what our lives are like. She now has a GJ tube with a tube going to her stomach to vent her when she starts to vomit. We talked about the whole swallowing issue. The thought is that it's a mitochondrial disease. We will know more when we see the neurologist. I guess if it was something simple or a gastro issue she would get better not worse. It usually becomes a neuro issue when there are signs and symptoms that worsen as they are in her case. She will most likely have to have a muscle biopsy, NOT FUN!!!!! I really don't want to have to do this, it is painful!! So this is where we are at. She probably won't be able to ever eat by mouth, not sure how I feel about this yet besides crushed. Drew went with us this time and he was so happy. It was comforting for him to be with us.

While we were away my Mom cleaned our house from top to bottom, THANK YOU!!! We lost
the best cleaning person/friend ever just about 2 years ago and have not been able to find anyone we are comfortable with since. We finally hired someone because there is no way I can do everything with 2 bad legs and she canceled, we miss Roxanne.

Have a great week everyone,
Janet

All over the place.

2008-11-16T04:47:00.000-08:00

This post will be a little bit about everything.

So Sunday Mom moved in with us for a bit. This is hard for me. I love my Mom, love that she is here to help but I hate that kind of help. It's not a personal thing at all. If my Mom just moved in for no reason I would be fine. The deal is she moved in because once again my life is turned upside down due to my leg or should I say both of my legs. You don't go through what I go through with my leg with out any emotional scarring. Don't get me wrong, I have a GREAT life but this event in my life changed me. For the most part it changed me for the good but it also left it's negative mark. I don't want to need people. I needed people for so long. When I can't walk, drive, be independent it brings me back to a place that I don't want to go. I hope to be driving in the next few days. With all of this said I do appreciate what everyone has done. So James thanks for loving me through everything, Mom for giving up your life to help with mine. I love you and appreciate everything you do for us. Sean and Dad for just being there. Andy and Sean for dealing with cars. Andy you have no idea how hard it was to call you and ask for help, thanks. To everyone who offers to help and I say "no we are ok" thanks for the offer. Sometimes the offer means more then the action of doing something. I will know in the next few weeks what will happen with my leg.

Outside of that stuff it has been a pretty good week. We spent the entire week at home. No Tampa for us this week. It was a welcome break for all. I got to chaperone Drew's class trip. He was so excited. He had one the week before and I had to cancel on him to be with Rylee. Rylee was ok this week as long as I held her, she was not feeling to well. We spent Saturday morning with the Andersen's and then went to Jason's party. Rylee was having a much better day and had fun most of the day. She even let my MIL hold her briefly. Both kids had a great day. I was going to go out to dinner with Robyn and her Dad and James was going to put the kids to bed but Drew was not to thrilled, he wanted me home. I decided as a nice treat for him I would ask him if he wanted to join us. He was thrilled, it made his day. It was something special for him and I.

Rylee will be having a procedure done on Friday so we will head up to Tampa on Thursday. I have a good feeling about this so please pray for her. I know she will always be sick. I just want to be at a spot where are managing everything and not always going in and out of ACH.

Hope everyone one is well,
Janet

Seriously Enough, MERCY!!!!!!

2008-11-08T04:31:00.000-08:00

This has not been a great week for us. We had to tell Drew that yet again we would be going back to Tampa, not a happy camper. This is so hard for him. On Monday at Drew's soccer practice I slipped and busted my good leg really bad. I didn't want to admit how bad at first because I needed to be with Rylee. I was not about to not be with her at the hospital. I NEVER break down but in the parking lot I just fell a part. I hate to say why, but seriously WHY????? I see the ortho on Monday to see if I will need surgery. It's better but not great. The loud popping sound was not a good sign. Oh well I will get through this with Grace too. Having a fused leg makes the rest of your body take the brunt of everything and the left leg obviously had enough. I'm so grateful my Mom is here to help. I just wish she didn't have to.

Ok, on to Rylee girl. We did the 48 hours in the SMU( love this area, private rooms) She showed no signs of seizures which was great. On Friday she went for her swallow study and she scared the crap out of them. She started to do what she does to us. The test that was suppose to take 3 hours was ended in 15 minutes. She passed liquids ok but when they gave her food, it was bad. The food is getting caught in the exact area that airflow goes through. There was no air in or out and then she started to aspirate into her lungs, not good. Thank God I know she does this because the people doing the test were trying really hard to not freak in front of me. At this point she is not able to eat by mouth. I'm not really sure what happens next because the Dr's need to watch the DVD of the test. AS soon as I left the room they were on the phone with the Dr's so we should know more by early next week. They are also going to move her feeding tube to a different place in her intestines and make a 2 valve port. The hope is that we can feed her through her intestines but vent her stomach before she starts to vomit and put her zofran. She has lost over a pound in the last week.

Ok, off to get the kiddos up.

Janet

Putting this off:(

2008-11-02T04:49:00.000-08:00

Ok, so we are back home AGAIN, but, not for long. After seeing Rylee's neurologist and having her EKG they decided we could go home for the weekend. It was really important for us to be home for Halloween. Drew was still traumatized from last year when we were in the hospital and missed it. We have to go back this week until at least Friday. She will have to be hooked up to computer monitors for the an extended EEG. They really want to pin point why she stops breathing. I will keep everyone posted the best I can. Feel free to to text me. I will text back as soon as I can. Not looking forward to this. You all know how much she dreads this and we have been up there for the last month. This to shall pass:)

Pumpkin Picking:)

2008-10-26T04:30:00.000-07:00

OK, so I always miss home(NY) the most in the fall. It's my favorite season. The leaves changing, pumpkin picking, apple picking, fall festivals and cool crisp air(not cold.)Yesterday we took the kids to get their pumpkins at a church down the road. I give them credit they try to make it like a real patch but let's face it, it's a bunch of pumpkins on platforms on the church lawn. They have one small area for photo ops and that's as good as it gets. We did hear about another church that at least has hayrides, might have to try it next year. Oh well, have to take the good with the bad. WE DON'T HAVE TO DEAL WITH SNOW!!!!! and it does not get dark at 4:30. The plus is Drew and Rylee really don't know the difference because they have never experienced anything else, but Mommy and Daddy do. The kids had a good time

Next Week

2008-10-24T12:54:00.000-07:00

We will head back to ACH on Tuesday as I know anything I will let everyone else know. Rylee not eating has it's good moments and bad ones. It's really hard for us because she's not crying this loud pissed cry it's this cry of sadness. So hard to listen to. My 20 month old should not feel sadness to that depth.

I'm posting a pictue of her walking around with a cup. She loves to roam the house holding a McDonalds cup, weird but cute.

Building Forts

2008-10-24T12:49:00.000-07:00

So we have hit the stage of fort building. I remember doing this with my brother when we were kids. We would go downstairs and go into the boiler room where all the extra blankets and pillows were and build away. I'm sure it drove my Mom crazy because it was such a mess but it was a blast. James and I now get to do this with Drew, so much fun but it makes a MESS!!! We all know how much I love that, truly my Mothers daughter.

Ups and Downs!

2008-10-22T18:05:00.000-07:00

Ok, so a lot has been going on the last few weeks and I can't wait to share it all but I don't have the time to write about it right now. Look for another update soon.

A few weeks ago Rylee choked and stopped breathing briefly. I had no idea why. It was quick and enormously scary. A few days later she did it again and on Saturday once again it happened. I can deal with pretty much anything but I draw the line at not breathing. I think James and I handle things well but this is to much for me. We went back to St. Pete and saw Dr. W. We are not completely sure what's happening but she is no longer allowed to eat by mouth. This will be HELL for us. Rylee loves to eat, she knows when she eats, and where her food is. This breaks my heart into a millions pieces because up until this she was finally gaining weight, looking good, happy and walking. We will now go back to endless hours of crying. God help us get through this. Tomorrow I will call her neurologist. We need to know if she is having seizures or if this is all related to her digestive system. She will go back up there in the next few days for EKG, ECG and swallow study. I will post the results
as soon as I can.

On my last post I put down all the October birthdays and I forgot my Godfathers Uncle Frank so happy belated B'day, love you and sorry.

Aunt Pat , you rock and I'm so proud of you. You went from a duck paddling with swimmies to a soaring eagle. This could not be a better month for you to kick some BIG C's ass.

Love to you all,
Janet

Back!!!!!

2008-10-08T18:26:00.000-07:00

We are home from St. Pete. Rylee did great, Thank God. I love the Mickey button it's so much better for her and for us. She no longer has a tube hanging out of her and tied up into her diaper 24/7. We just attach the tube when she is on feedings. We still don't know totally what's going on with her and that scares me to death but we just take it one day at a time. As Dr. Jones said a few months ago when we saw him last that this is just a band aid until we can put all the pieces of the puzzle together. I really hate BAND AIDS. I'm a need to know person so this is very hard for me to except. Life is no longer the same for us. I feel as if life has stopped this past year and half. Yes, we have done lots so that everything appears normal to Drew and anyone else who sees us but I don't think I have really lived in those moments. This is our life now and I want to start enjoying it again. No, I don't know what each day will bring but each day is a gift. I want Rylee to start doing things. She has missed out on so much it breaks my heart. She is WALKING!!!! I am beyond stoked. We were not sure that it was possible but she is doing it. She is not stable and her hips are bad but she self corrects so with time I hope she will be strong enough to fix it on her own. It helps that Mommy use to rehab for a living so I have been able to work with her a lot. Speech therapy has been awesome so far and I hope it continues. I can't wait for her eat normally and talk. She has started say quack quack and ruff ruff. She has also started to sign which helps. She gets frustrated because she can't communicate so all this should help.

Drew is the best big brother. He loves his sister so much. Leaving him again was hard but he is getting better with it. I hate seeing the pain in his eyes for his sister, it is gut wrenching.

Hope everyone is having a great week, we are tyring to make the best of ours:)

Happy Birthday Cindi, Mr.A, Holly and Grandma:)

Janet

We have a date for the procedure

2008-09-28T18:07:00.001-07:00

Rylee will be going back to Tampa Oct 6th and will have her procedure done on Oct, 7th

Update of last week.

2008-09-28T12:05:00.000-07:00

I guess it's really almost two weeks ago now. We had a really busy but mostly fun week. Drew had 2 birthday parties(read post about my swim in the pool) he had a blast. It's always fun to see him play with all of his friends. It was also book week at his school and Thursday night was family fun night. I volunteered to work it, not sure what I was thinking. It was fine. but I worked a little longer then I was suppose to and that was a bit hard because Rylee needed to go to bed and James had kickball. Thank you Carly for taking over for me so we could leave. Drew had a great night playing with his friends and reading books with Mrs. Rhoda. It was really nice to get everyone together as a family. I can not stress enough how much he loves this school and how much they love him. Makes writing the check every month a little bit easier:)

Ok so kickball was a blast for James. His team lost and of course they lost to our friends team but he said he loved it. After the game the team went out to the Edison. I love that James has something to do besides work that he likes. He so busy with work and us that it's a night where he can just have some fun, he NEEDS it and deserves it. Hopefully they will win their next game. I will keep you posted and update with some photos.

I went out two nights in a row. That's a lot for me. Friday night was MNI at Mamapalooza Mom's house. It was fun. We watched What happens in Vegas( I think that's the name of it) I thought it was cute but some thought it was the worst movie they had ever seen. It was fun meeting so many new people. Lucky Lucinda did not have to drive so she had more beers then me:( I did enjoy the redstripes I had though, good old Jamaican beer:) Saturday James and I both went out. I can not express what a big deal this was. We have not been out together in over 7 months. It's really hard for both of us to leave Rylee girl. Our friend Leah sent us an email about a beer trolly in the Cape and we thought it would be fun so we decided to try and see if we could make it work. We did and we had a blast (thanks Leah for asking us.) People watching at the Pearl was a favorite for James and I. Sadly we had to leave early James had to work Sunday and again, the Rylee thing. It will probably be another 7 months before we go out together again but for one night we were out as if all was normal:)

Rylee

2008-09-25T20:00:00.000-07:00

Just a quick update and I will be back tomorrow to update about everything else in the past week. It was a busy and fun one. Rylee lost a bit of weight, not good. I knew this was going to be the case since we had a long spat of vomiting everything up. If we can keep her vomit free she should gain so here's to a vomit free month. At this point she may alos have CVS and dis-functional digestive tract. We will have to wait until she is a bit older and bigger to figure all that out. With in the next 3 weeks she will go back to ACH and have a mickey button put in. I will keep you updated on when that will be. Her weeks are filled with therapy, feeding tube and Dr's. We are doing our best to involve her in everyday activities. When the days are good they are really good and when they are bad they are really bad. The problem is you just never know what day it's going to be. She is looking great her face is full her hair is getting longer and she is trying to communicate. Keep praying for good days. I will update more about the rest of us tomorrow.

Janet

Swimming with clothes on!!!!

2008-09-18T12:55:00.000-07:00

Ok, so alot of you know that when I was preggo with Rylee a little boy almost drowned in our pool. It was one of the most horrifying moments ever. I'm narotic about water anyway, not really sure why. In my previous life I must have drowned or been burned to death as I have issues with those things. Yesterday Drew was invited to a pool party and against my better judgement we went. Thank the lord James made it home to watch Rylee. Well, one of our friends is pregnant with twins and she has 2 and 4 year old. She bought her husband with her to help. He was a little busy with all the other kids who wanted to jump all over him when their daughter jumped in the pool( the 2 year old) No one was moved to help so in I went in fully clothed, it was a sight. Not only was I soaking wet, when I went to change Drew in the bathroom toilet paper stuck to me and I had no idea. I walked out of the party and ran into publix soaking wet with toilet paper stuck to the back of my legs. Ugh, it was a sight but at least Lily was ok.

Fisher Price party

2008-09-15T10:25:00.000-07:00

So Saturday we were invited to our friend Terra's house for a fisher price party. She won a contest and they sent her toys for all of us to try out. When we got there Rylee got down and played with one toy right away. Our child never does this. She hardly gets down and plays so for me this was a little emotional. Well they raffled off the toys and I will give you one guess who won it????? Yup, it was us, thanks Terra. The last thing we needed was another BIG toy both of our kids have not stopped playing with it. It was a fun day for all:)

We are still here and trying to get better at this.

2008-09-14T15:51:00.001-07:00

Hey Everyone,

Sorry once again it has been so long since a post had been done. Since it has been called to my attention by many here goes.

Drew is doing great! Still loves school. Of course it's only Pre-K. I hope he still loves it when it's more work and less play. Soccer has started up again. We now have nite practices, ugh!!! It's really not that bad and he enjoys it. He does wonderful in practice but he's not that aggressive during the game, if you can believe it. I guess it's me telling him "no hands" all the time. Oh well, as long as he enjoys it.

Rylee is doing ok. She had rough week and a half. She was not keeping anything by mouth or tube down. We have taken her off food by mouth lowered the rate again and now she is doing much better. This of course does not help us get to bolus feeds but I don't really care as long as she gains. She has had a great weekend. Lets keep our fingers crossed that she continues. I started Mommy and me with her last week and it's a bit of a challenge because a lot of it is centered around food and she is behind all the other kids. We will stick with it and hope that she gets better. She had her speech eval and she does not really know how to chew correctly which is why she chokes a lot and her speech is behind so we will be starting that therapy soon. Afternoons are still a nightmare for us but we are working through it. All in all she is doing well for now and hopefully it will stay that way.

James and I are doing well too. James will be playing kickball on Thursdays, that should be funny stay tuned for an update on that. I was suppose to play too but they changed days and I can't do Thursdays plus we both can not be away from Rylee when she is on the tube.

Hope everyone had a great weekend.

Where does the time go????

2008-08-21T17:41:00.001-07:00

I can not believe how time just flys by. Drew started Pre-K this week!!!! He totally loves it and that makes James and I feel wonderful. We toyed with the idea of pulling him out of the school he had been in the last few years. They have a program here called VPK which just means that it's free. TJ where he goes now is VERY expensive and with all Rylee's mounting medical bills and the fact that the school is just way over priced made us think we would pull him and send him to VPK. After much research we were not thrilled with any of the VPK programs. The curriculum they follow is way behind what he has learned already and the last thing Drew needs is change. TJ has done everything in their power to make sure Drew is doing well and feels safe, secure and loved. He has had a lot going on in his little life the past 18 months, poor kid. He just thrives there so we decided to stick it out another year and we are beyond excited that we did. If you could see him everyday you would never second guess keeping him there. Rylee actual starts Mommy and Me in September. It feels like yesterday that I was there with my little man. Soccer starts again on Monday. We just went and bought new cleats. I love watching him run around. I'm not very excited that they are now at the age where they have night practices but that's what happens as they grow. Nights are the worst for us so we will do our best to make this work and we have friend who offered to take him to practice if need be( thanks Leah) Hopefully James and I will figure it out so that one of us can be there. It's really hard for Drew when we miss these things because it always goes back to his sister being sick:(

Tomorrow I leave to go to Tampa to do training course with Robert Jones( make up artist to the stars) Since joining Mary Kay Robyn and I have done work with brides so I need to learn more because we all know how good I am at that stuff(NOT) It is a totally crazy career path for me but it fits into my schedule and so far is financially beneficial. I will go to Tampa tomorrow come home Saturday night then go back with Rylee on Sunday. She has to be at All Children's on Monday morning. Rylee girls seems to be doing ok. Last week we found out she has an infection so she is on antibiotics for that. We also found out that she will need leg braces. She just is not able to walk on her own. When she walks her hips externally rotate and her knees hyperextend(I know all my Towson peeps will understand this) Thursday she will finally have her speech eval, thank the lord. She really needs this. So it's safe to say we have a very busy medical week ahead of us. I wish you could all see Rylee in the last week or so she totally deveolping a personality, the girl is funny but don't tell her NO!!! That pisses her off beyond belief. She loves to give her brother loads of kisses and hugs, to cute. Ok, off for the night. I will try and update next week after Neuro, Gastro, brace and speech eval.

Janet

Home and hopefully staying here for a while

2008-08-09T04:37:00.000-07:00

Ok, so being home has been a little on the rough side. Trying to balance the feedings with allowing time to be able to go out and do things with Drew has been a challenge and after her Dr's apt where she did not gain weight we have increased the amount of hours she needs to be on the tube. It would not be so bad if she was able to wear a back pack with the pump but she can't so she can only crawl so far away from us and we always have to be with her to carry the pole where she wants to go. If she wants to walk holy moly that takes talent. She holds both our hands and we have to figure a way to maneuver the pool all at the same time, not easy. Dinner time is the worst time for us. One it's so hard to cook because she's on the tube then and that is usually her cranky time. Thank you to our neighbors Gail and Tim who made dinner for us our second night home. On the other hand we are Soooooooooo happy to be home and in our own comforts. I will do this for as long as I have to as long as she is ok and gaining. Drew has been amazing and I can only wonder what this is doing to him. I worry constantly about that. All I can do is my best but I feel like it won't be enough. He is petrified that every time I leave his sight that we are going back to Tampa, poor guy. Ok, so for a Dr's update as I mentioned above she did not gain. At first I thought she did but after checking with Dr. W, she did not. My child who poops once every 3-6 weeks now is pooping all day. We are hoping that this is just because she can't handle the new stuff they have on, or that the flow is to fast. We have slowed down the flow but what that does is increase the amt of hours she is on. Right now we are 18 hours a day and by Monday could be up to 24. If this is still a problem after the changes in flow and formula things will not be looking to good. In that case there maybe a mal-absorption issue. I'm totally leaning towards the fact that she can't handle the resource 1.5 because she did fine in the hospital on pediasure. We will get stool cultures if we can just to double check. I have to check her every hour during the night so I'm a bit on the tired side. Rylee gets the tube disconnected and then all the food inside her and all the food in the bag ends up in her bed, not good. The one thing we thought the peg tube would help with was her wrapping the cord around the neck, this is what she did with the ng tube. Well, the other night I went in and she had the cord wrapped around her neck 4 times, what am I going to do??? This scares the crap out of me. Other then all this stuff we have spent the week trying to make it fun for Mr. Man. He goes back to school in a week and I don't want it to end on a sour note for him. We have had Stephanie over a lot. In the afternoons this is usually a lifesaver for me. They keep each other busy and it allows me time to focus on Rylee. We went to chuckie cheese with Deana and the kids and yesterday we had a playday at Deanas with Lucinda and Leah. It was great to just hang with everyone and hopefully we can start doing it more. Now all I need is a major MNO or just a NO does not have to be Moms. Oh well, I better go the fam is coming over for breakfast and then I have a MaryKay thing this afternoon.

WE ARE HOME!!!

2008-08-03T16:59:00.000-07:00

I can not tell you how happy we are to be home. Lets just hope it's for a while. 11 days in the hospital was insanity, literally.

Friday

2008-08-02T15:04:00.000-07:00

Sorry this is so late. Rylee would not let me leave at all until now. She is doing really well today. Yesterday was rough she was in a lot of pain and spiked a pretty high temp. Everything went well and we hope to be going home tomorrow. She is fever free and off the morphine. We all know how I am so you can imagine what she is like, one tough cookie. She has a little bleeding around the port site because she is relentless with wanting to pull it out. I warned the docs that this would happen. Having worked with Rylee for the past year they were afraid I was right and I am. We are now brainstorming on how to keep her hands off. She was vomiting yesterday too so we started her on pedialyte first then to kids response. Giving Rylee something new is usual not a good thing since she normally vomits it back up but the tube seems to work and she handling it well. Thanks for all the phone calls and well wishes. I will touch base with everyone once we are home.

Update

2008-07-30T18:43:00.000-07:00

Ok, so not much of a weight gain today, bummer. She and I are still pretty miserable. The days are excruciatingly long. On a plus side we LOVE all of our nurses they truly ROCK and make this tolerble.

Dum Dums

2008-07-29T17:47:00.000-07:00

I want to kiss the inventor of those itty bitty lollipops. They have literally saved our life this past week in the hospital. Rylee is miserable here but as long as she has a Dum Dum and I'm walking her in the papoose all is good. We walk about 10-12 hours a day which is good since all I eat is crap. I can't put her down to eat so it's usually fast and fried, yuck!!! Thanks to my Dad going to a few stores we should hopefully have enough lollipops to get us home:)

RLYEE IS GAINING A BIT OF WEIGHT!!!!!!!!!!!!!!!

2008-07-29T17:44:00.000-07:00

Title says it all:) I'm so excited I know there is so much more ahead but at least she is putting on a few ounces a day. Everything is still set for her to get the perm tube on Friday. With any luck we will be out of here Sunday or Monday.

Hopital Update

2008-07-27T11:15:00.000-07:00

Not to much to tell. Things are going along fairly well except for lack of sleep. Rylee will not sleep here at all. I will post more as we find out more. Oh some good news the kidneys look good!!!!

Change of plans with Rylee

2008-07-22T17:18:00.000-07:00

Rylee will go into the hospital Thursday in the AM to insert the NG tube not the perm yet. In light of some new test results we will do this first then next Friday she will most likely have the perm tube put in or A TPN. We will be in the hopital for at about 10 days. I will try to keep everyone updated as best as possible. We love you all and all the well wishes.

Janet

Rylee Update

2008-07-21T16:52:00.000-07:00

This will be short with stuff left out but here is the main gist of what is happening in the very near future. Rylee will not have the NG tube put in with a long hospital stay. They will be operating this week(we hope) to put in a perm tube. We have no clue if it will help or not but we will find out faster then if we did the NG tube. She will be in the hospital for about 3 days. The first day will be pure recovery they are cutting her gut open. After that the hook up and feeding will start if all is ok she can come home. Shortly after she is home we will most likely be leaving for St. Louis. Please keep her in your prayers.

Janet

Rylee Update

2008-07-14T12:10:00.000-07:00

The test that we have been waiting for was never done. Since so many have been run we lost track a bit. This morning we took her to get it done and will hopefully have the results back soon. We will head back to St. Pete on Sunday and consult with the Docs on Monday. A final decison on whether we try the J-tube or not should be decided this day. If we give it a shot she will probably be in the hossy for 7-10 days as this can be very painful. I will try and keep everyone posted not sure if I will have the computer or not. I will at least try and get on my Dad's. I believe prayers can be answered so please pray for her.

Puddle Jumping

2008-07-13T04:59:00.000-07:00

So yesterday we had a BBQ for Mom's birthday. We had all gone swimming while the kids were napping. Drew woke up to the pouring rain. He was so upset that he missed swimming with us so we decided the next best thing, puddle jumping. He had a blast!!! We dressed him in his rain gear and the rest of us got umbrellas and off we went. There is nothing better then seeing your 4 year old having innocent blissful fun. Not a care in the world on his face, it was awesome.

What to say

2008-07-12T05:34:00.000-07:00

Ok, so we understand that people don't know what to say to us because of Rylee so what a lot of people are doing is staying away from us or just stopped calling. Although we understand, know that this is probably when we need our friends the most. We don't need to talk about it all the time we just need distractions from all of it. I'm unable to talk to family about it and for the most part I don't want to have long drawn out conversations. We have lost a lot of people in our lives this year because of this and we don't want to lose more. It's better to say something then nothing. We know this is no fun for everyone else and that people don't really want to be bothered but just keep in mind what life is like for us. We love all of you and understand, it's just hard that the people you think will be there for you are the ones we hear from the least. On the 21st we will be back in St. Pete.

Where to start???

2008-07-12T04:41:00.001-07:00

I have no idea where to start, we have done so much lately. I think I last left off with an update on Rylee. I know it was a poor update and I apologize for that. Sometimes I'm at a loss for words or basically just shut down. NY was wonderful in many ways and horrible in others. It was the most gut wrenching week and no one should have to go through what I did. My kids were let down again by some one who in my opinion has their priorities really screwed up. On to the good stuff. We were able to spend lots of time with my friends and some family. Drew was so excited to go to the bronz Zoo again and just be the center of every ones attention. We went to the feast twice which he loved. I have been going to this same feast since I was born and everyone goes back each year. It's great to see all the people I grew up with all in one place and of course the zeppolis, oh and free beer. The fire house does have some good qualities. All in all a week that I wish would have been different on many levels but also comforting to be "HOME" We left NY a day early because we decided we wanted to spend an extra day in Baltimore. I'm so happy we did this. I miss living there. The inner harbour, canton and Fells were awesome. We took Drew and Rylee to Port Discovery and they both loved it. For whatever reason Drew decided that he wanted to milk a cow while we were in PA. There are cows everywhere so I thought someone will let us try, NOPE. They have machines that do this. We were told about this maze place that has a cow kids can learn on so off we went. They were not going to get the cow until the week after we left. He was so disappointed. Do you know that this port discovery place had a fake cow that you could milk and it spat out water. He was in his glory. This place was really cool and it melted my heart to see there were even things for Rylee to do. We walked around the Harbour went on the ancient carousel(a few times), went to Camden yards, fells point, canton we basically just had an awesome time. We ate at ESPN zone Drew died and went to heaven. I was able to meet up with some friends for a lunch date. It was so weird to walk by all the places I got drunk at years ago, it seems as if it were yesterday. After MD we packed up and started the 12 hour drive to Hilton Head SC. It was great to spend a few days with my Aunt and Uncle. Drew drove all over in the golf cart and corvette. He now tells me daily that Mimi is going to buy these things for him. Listen my parents do a lot for us and buy us a lot but I will tell you for sure he will get the golf cart but there is no way he will get a corvette. We had a lot of fun on the 4th. My Aunt and Uncle took us to their friends house Sue and Paul. They live on the water with a really nice pool, and boat deck. When I think of heaven this is what I think off. At dusk the dolphins came out and they were swimming right in front of the deck, amazing. We BBQ'd and stayed for the fireworks. To my surprise the kids did awesome but the next day was one of recovery. On our last day there and our last day of vacation before we started the 8 hour drive home we decided to go to Hilton Head Beach and Sea Pines. Drew and Rylee had a great time jumping into the waves. Yes, my 25 inch 12pd daughter thought she could just keep walking further and further into the water to get to the waves. She's ballsy like her Mom but someone needs to explain to her how tiny she is. After the beach we went to Sea Pines to go to the Salty Dog for ice cream and a little time on the playground. We were all tired and it was early to bed since we were getting up to head home in the morning. We had an awesome vacation minus the 206 dollar ticket on the way home which even my Mother says was not my fault but we were in some podunk FL town and I guess they have nothing better to do then give out bogus tickets. Oh well, what can you do. Can't wait for next years road trip.

Rylee Update

2008-06-24T11:10:00.000-07:00

We are back and cell service sucks at Anna's so I'm hoping everyone checks in here like I told you to:) We don't know to much more now then before. They have to run some test and start discussing Growth Hormone Therapy. We have no idea if it will do anything but it's something. Other then that not to much to tell. We will probably end up in the hospital when we get home to do everything that needs to be done. Please keep praying for her she needs it.

Janet

Summer Trip 08 part two

2008-06-22T17:59:00.000-07:00

We have spent the last three days in PA. It simply amazes me that Drew can get so excited about Thomas still. We had a awesome time. We stayed in a caboose, rode Thomas and a steam engine, went for horse and buggy rides, went to Cherry Crest farms. It was so much fun. If anyone is every near East Strasbourg you must stay, there is so much to do and the kids have so much fun. Thomas is wonderful here. We have seen Thomas in Miami and it sucks there. We are now in NY. We Spent the day trying to see everyone and have a little party for James. The only negative is James flight was cancelled. Oh well, at least he got to see his brother and New Girlfriend(like her) He is staying at Frankie and Cindi's tonight since John was unable to bring him the airport tomorrow. Love Frankie and Cindi they put the party together for him and were gracious enough to change their plans to accommodate bringing James to the airport and crash on their couch. You guys rock, thank you so much. Tomorrow we are going to visit my Grandmother, wish me luck.

Road Trip 2008 part 1

2008-06-18T07:08:00.000-07:00

We are in VA have been here since Monday. I have to say much to my surprise the kids did great in the car. It took us about 15 hours to get here and Rylee had only one minor meltdown and James only tried to crash us once. Drew has been having a blast camping in a RV, playing mini golf, swimming and just having some good ol Daddy time. James has been working around the clock so family time has been limited. The things we do to keep up with medical bills, the joys of adulthood. Ok, Drew is bugging me to "PLAY NOW". We are off to PA tomorrow to sleep in a caboose and ride Thomas again, to say Drew is excited is minor statement. I will try to post in a few days. Can't wait to see everyone in NY on the 22nd.

Getting Ready To Go!!!

2008-06-15T03:58:00.000-07:00

I can't wait to head up North tomorrow. It's so much work right now trying to pack for everyone though. I'm constantly thinking what am I forgetting??? I keep looking at the pile of stuff so far, wondering how it's all going to fit in the car. Lucky for me when I was a kid we use to drive to FL twice a year to see my grandparents. I use to watch my Dad pack a car like no one I had ever seen before. I can make anything fit in a car. It amazes James every time. We will be stopping at VA first then to PA to sleep in a train, Drew is going to love this and then we go to NY for a bit then to MD and SC before we finally return to FL. We should be gone for about 3 weeks but Rylee girl has an apt with Dr. Speiser in NY so we have been told that is very likely that she will end up in the hospital there, poor baby. She is probably one of the toughest people in my life. Her first year has been full of Dr's and hospital stays and my heart breaks for her. We will keep our fingers crossed and our prayers working on over drive. The next 6 weeks are crucial ones for her. We have not been back to NY since Rylee's Christening. This is a big deal for me. Up until this past year I would go back home about every 6-8 weeks. I love NY, I love my family and friends there. I wanted Drew to experience that lifestyle. I love FL would never move back but I will forever be connected to NY. The other day we had asked Drew where he was from and his answer was NY. I guess we went back a little to often. He truly thinks he's from there and will argue with us if we try to tell him otherwise. Poor Rylee has only been back once. Hopefully she will get better and we can start going back more again. Thoughts of what the car ride is going to be like with the kids keep filling my brain. The first driving stretch is about 16 hours. Both of my kids don't sleep in a car or stroller only in their beds. Weird, I know. Since we are leaving at 3am I'm hoping that for once they will sleep. I have to run to go pack more. To everyone in NY we can not wait to see you all. We miss you more then you know. It's very hard to have your biggest support system be so far away. I have the best friends in the world who are there no matter what happens and love them more then they know.

Can't Believe I'm Here

2008-06-12T12:06:00.000-07:00

I have read many blogs but never thought it would be me blogging. A friend of mine(Lucinda) just sent me the her blog website so I decided to follow in her footsteps. Another thing for me to waste my time doing. Oh well, they are fun to read. It's easy way to update everyone on what's happening in our lives. So I am now an official blogger. Everyone can be updated on my boring life.

Janet