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Christmas - 2008
Another Christmas without Ashleigh...
So many times I would be out shopping and see something I wanted to buy Ashleigh. A book, a sweater, music, CD's, adapted toys, and soft PJ's.
We hung her stocking on the mantle. We added another butterfly ornament to the tree. We made a donation in her name. We did everything we could to include her in our holiday. I could tell you all how broken we feel, how bad this hurts and how much we love and miss her...but you all know that already.
Someone told me I should start thinking of myself. How do I do that when part of my heart is broken, part of me is missing?
On Christmas morning, we opened our gifts, had breakfast, played a ton of games, had dinner and headed out to the movies.
We went to see Marley & Me. We felt it was a great way to remember Ashleigh. Ashleigh played with a black lab in therapy named Marley. She loved him and would give such an attitude to the speech therapist (best in the world) whenever she came without him. Jen read "Bad Dog, Marley" at Ashleigh's services. Our black dog, Duke, remindes us of Bad Dog, Marley....and he was our gift from Ashleigh. As usual, she likes to keep us on our toes and Duke certainly does help her with that!
We hope you all have a healthy and happy holiday season.
Saturday, November 29, 2008 10:00 PM
one year, 366 days (leap year), 8,784 hours, 527040 minutes, 31,622,400 seconds...
We are still so lost without our Ashleigh. Not a day goes by that our minds are not consumed by her. On the outside, we appear well...on the inside we are shattered into tiny pieces.
Last night, I found myself trying to think of her last night in her bed. Today, I would look at the time and think of what was happening at that time a year ago.
We went to a butterfly museum today. Howard thought that was a good place to remember our girl. We played board games and watched a movie. Fred Clause...at the end of the movie they played the song that we release balloons to every May at the Rainbow of Heroes Walk. We wrote on a balloon to release at 10 pm...the time she moved on ahead of us...however, it was raining so we couldn't release it. We decided to put it in her bedroom. Mackenzie read Brown Bear, Brown Bear.
I can say...we still feel some what numb. People say that time will heal, that as time passes this will get easier...I just don't see that right now.
We have received wonderful messages, emails, phone calls and cards...all remembering our beautiful girl. Thank you all so much for your continued support. We couldn't imagine this journey without you all. Thank you.
Mackenzie wanted to share some with you...so I am typing what she is dictating, amazing that she is only 9 and has grown into such a awesome spirit...
"We all miss Ashleigh's snuggles and kisses. Everyone misses her and will always love her. I miss reading books to her and her laughing and smiling at me. I loved her slobbery kisses and snuggles and hugs. She was the best little sister ever and I will always miss her. I know she is better in heaven with Jesus but I wish she was here with us."
"Ashleigh - I miss you and love and I wish you were here with me and you will always be in my heart." - love, Mackenzie.
Saturday, November 15, 2008 11:12 PM CST
Happy Birthday, sweet princess! We all love and miss you so much. We hope you had a celebration that was fit for the princess you are.
Monday, October 27, 2008 7:42 PM CDT
I wish I could say that our life was not as "exciting" but Mackenzie took her second trip to the hospital in the last 6 months.
We were at Home Depot standing in line to buy a few things, including a can of spray paint. The can made a pop noise and Mackenzie dropped it. She bent down to pick it up and the can suddenly exploded in her face. She had silver paint all over her face. We were very lucky that she was wearing her glasses (I don't even know if I told you she got glasses). Anyway, the glasses protected her eyes. Her face, hair and clothes were covered. Howard picked her up and we rushed her to the hospital because we were worried about her eyes.
We were taken right back and they flushed her eyes with saline...600mls in one eyes, 400mls in the other. She is okay, but she is scared that bad things will happen to her.
Luckly, the hospital was great at calming her and she started to laugh after they started flushing her eyes and she could open them.
We are having Mackenzie's birthday party a little early this year, for two reasons...first, she is have a High School Musical 3 party at the movies so we wanted to get all the girls there before they were going crazy to see it and the other reason was because we were not sure how well we will be by the end of the month. Ashleigh's birthday is in a little less than 3 weeks, her one year "angelversary" is in almost a month.
Not a day goes by that we don't think of Ashleigh. We talk about her, laugh at her silly ways, cry because we want her with us...our life is consumed by the pain of missing her.
We have decided that we will be "adopting" another child in memory of Ashleigh for her birthday. We will take the money that we would spend on Ashleigh and buy gifts for this child, who is traveling a difficult journey. We hope Ashleigh will be looking down and know how much she is loved.
Monday, September 29, 2008 7:09 PM CDT
10 months
40 weeks
280 days
6720 hours
403,200 minutes
24,192,000 seconds
That is how long it has been since our Ashleigh went to heaven...
A woman is pregnant for 10 months, 40 weeks, 280 days....
Tuesday, September 2, 2008 6:40 AM CDT
Many of you know my friend, Colleen, she has been an incredible friend to me since we met at therapy 4 years ago. Colleen's father earned his wings and was healed yesterday morning from brain cancer. Please keep Bill and his family in your prayers as they enter this journey. caringbridge.org/visit/billconaty
Thank you all so much for your post and messages this week. Thank you all for still checking in on our family. We have a huge favor...we are making a cookbook in honor of Ashleigh. We are asking for you all to send your favorite recipes with your name and how you know Ashleigh. Please send it to my email... moocow517@comcast.net
We will be starting a foundation in Ashleigh's name to help children receive the equipment and supplies they need for therapy. We think it will be called Ashleigh's Gift of Hope. Ashleigh received wonderful therapy and we want to help other children meet their potential. I will always be grateful for her therapist who believed in her...Jen teaching her to communicate when so many didn't believe that was possible, Jamie teaching Ashleigh to bare weight and Ellie and Sue Ross teaching Ashleigh to hit switches. I will let you know more about the foundation as we look more into things...
Mackenzie had a great first week of school. We spent this weekend looking for a barn for her to ride. We selected one that was recommended by Dr. Escolar called Pleasant Hill Farm. We took Mackenzie to get new riding boots, gloves and breeches. Her helmet still fits her. We also looked at high boots and show clothes. It was great to see her so happy.
Thank you all for your continued support, thoughts and prayers.
Tuesday, August 26, 2008 8:40 PM CDT
I don't know how many people still come here. I often come and read her guessbook, read old entries, the poems that have been posted and look at Ashleigh's pictures. I need to remember her life and I am so afraid of forgetting...
This week we celebrate the life of our daughter and mourn the loss of a dream and our sweet girl...Ashleigh should be starting kindergarten. Her Transplant Anniversary. 9 months since she left us.
First day of school...if Ashleigh was with us, she would have a kindergarten teacher coming to our home. Ashleigh would get dressed every day and enjoy her lessons. She knew her colors and shapes, she would learn more about numbers and letters, she would learn more about the world around her.
Let's pretend there was no such thing as Krabbe. Ashleigh would be starting school...getting a school bus at the end of our street in New Jersey with her big sister, Mackenzie. She would be wearing a skirt and short sleeve sweater...just like her sister did. Her long flowing curls will be half up and half down. She would have her book bag on her back, as she walked to the bus and entered her "big girl" school.
August 27th...5 years post transplant anniversary. We will celebrate the gift of the day. We will remember the day that was given to us full of HOPE and possibilities, when a simple bag of cells was brought into room 5209 and infused into our sweet Ashleigh's body. The dream I had of hearing the simple word "mommy". We believed she would be healed and I know she is, we just wish she was with us. I wish we could see her run and dance, spin around with her curly hair flowing behind her, hear her sing, laugh and say "mommy". This day is a gift that I am forever grateful for even though we do not have Ashleigh with us. This day gave her so much. Her smile, her story telling, her love for sloppy mommy kisses, laughing at her sister getting in trouble, telling stories about her sitter...Ashleigh was so amazing. Thank you for loving Ashleigh.
August 29th...39 weeks, 273 days, 6,574 hours, 394,461 minutes, 23,667,694 seconds since Ashleigh has earned her wings. We are still opening and closing her blinds, writing messages in a butterfly journal that sits in her room, playing music on and off during the day for her. This is a pain that does not ever go away, Ashleigh was my everything and she continues to be...
Always with love and HOPE...
Thursday, July 17, 2008 2:28 PM CDT
We have been so busy.
We went to the beach in New Jersey to drop Mackenzie off with her mom-mom before heading to New York for the symposium.
Never did I feel so much comfort from so many families. It was amazing the support and kindness we received. I had wonderful conversations with so many mom's (and a couple of dad's) about our children. I don't think I cried as much as I did there the entire time we had Ashleigh and it didn't matter because...everyone understood and supported me. I hope one day I could give as much of myself as these families have given to me. I thank each family that I had the honor of talking to. I will treasure each moment of our time together.
I am sorry I locked the website for a while. I received a negative message that I just wanted to avoid getting while we were away, this is a precious space for me and I do not want Ashleigh's website being used for that. I do have a friend working on it for me.
Every day, every place we go, bring floods of emotions. I walked on the beach with Mackenzie and Howard one night and could help but look at the little foot prints in the sand. I was trying to figure out what size Ashleigh's feet would be. Ashleigh went to the beach last year. She loved the sound of the water and the breeze of the air.
Mackenzie has been keeping us busy. She went to the emergency room a couple of weeks ago. She received IV fluids and some blood work. She started antibiotics for Lyme Disease because of a tick bite that she had back in May.
She also completed her study at Duke for the Lance Armstrong Foundation. She will do it two more times over the next year.
Duke, the dog, is well. We had a fence put up for him, so he can run in the yard.
Howard is going to start a new job soon. He is excited and nervous about it. It will be closer to home and better hours to allow more time for family time.
August 27th will be Mackenzie's first day of school and Ashleigh's 5 year transplant anniversary.
Tuesday, June 24, 2008 10:00 AM CDT
The Loss Of A Child
The moment that I knew you had died,
My heart split in two,
The one side filled with memories,
The other died with you.
I often lay awake at night,
When the world is fast asleep,
And take a walk down memory lane,
With tears upon my cheek.
Remembering you is easy,
I do it every day,
But missing you is a heartache,
That never goes away.
I hold you tightly within my heart,
And there you will remain,
Life has gone on without you,
But it never will be the same.
For those who still have their children,
Treat them with tender care,
You will never know the emptiness,
As when you turn and they are not there.
Don't tell me that you understand,
don't tell me that you know.
Don't tell me that I will survive,
How I will surely grow.
Don't tell me this is just a test,
That I am truly blessed.
That I am chosen for the task,
Apart from all the rest.
Don't come at me with answers
That can only come from me,
Don't tell me how my grief will pass,
That I will soon be free.
Don't stand in pious judgment
Of the bonds I must untie,
Don't tell me how to grieve,
Don't tell me when to cry.
Accept me in my ups and downs,
I need someone to share,
Just hold my hand and let me cry,
And say, "My friend, I care
Sunday, June 15, 2008 12:27 AM CDT
I made an entry on the 13th, so if you missed it, you can read it in the history.
I received this poem in an email. Happy Father's Day, Howard.
Oh, Dearest Daddy…
What can I say today???
To mend your broken heart…
On this father’s day
You know I would be there…
If only there was a way
Although I am in heaven...
In your heart I will stay
Just like you were always there for me…
I will always be there for you
Just look for a sign and you will see me…
In each sunrise and each sunset too
Remember the game we use to play???
“How much do I love you?” you would ask with a smile
But this time MY arms are stretched out so far…
For my love for you goes on for miles and miles
For My love for you, Daddy
Will always be true…
You are the best daddy in the world
And that includes heaven, too
So I am sending all my love
To you from heaven today…
And remember I will be with you…
Just look for me this Father’s Day
I love you, daddy
From your angel in heaven above
Friday, June 13, 2008 10:33 PM CDT
Friday, June 13th…how superstious are you? Will you avoid a black cat? Stay away from a ladder? Throw salt over your shoulder?
Do you know when the last time June 13th was on a Friday? It was the year 2003.
Howard and I sat in an off-white office, with a oval table, black leather sofa, dark brown bookshelves with a glass whale on it, a clock on the wall (to my right). Two doctors in front of us, one on the leather sofa. One doctor was wearing a white shirt and gray pants, the other was wearing a mint green and white maternity shirt. The doctor on the sofa was in a dark brown suit and orange shirt. The doctor on the sofa kept looking at his watch.
This day is engraved in my mind forever. It feels like yesterday, yet seems so long ago. The appointment we were told to “come without your children”, “we have a diagnosis”, “she has Krabbe”, “there is a treatment at Duke University”, “she will die”, “your only hope”, “don’t do it”, “not successful”.
It was 5 years ago today, Friday, June 13th, 2003…it was confirmed that Ashleigh Ryann Gwin had Krabbe Disease.
5 years ago today, started to grief the loss of a dream that we had for our special girl, however, nothing could ever prepare us for how we feel now.
Wednesday, May 28, 2008 7:36 PM CDT
A couple of quick things...
Ursula, it was wonderful talking to you today. I thought of your sweet angel girl alot today. Sending you a huge hug.
Thank you, Amber for the talk and reminding me not to pay attention to those who do not understand.
I received a call two weeks ago from a research center at Duke. They wanted to know if Mackenzie would be interested in being their healthy control study for a research project that is sponsored by the Lance Armstrong Foundation. They would like her to go to the clinic 3 times a year to have her weight, height, bone scan and talk to them about her diet. They would also have her wear a bracelet that will measure her activity for one week each time she goes in. They will pay her $20 each time she goes. There will not be anything harmful to her, no blood taken, no test that could cause her any harm.
I talked to Mackenzie and she was excited to do this for the children that we know who have/had cancer and leukemia. She asked me for some names of children that she knew and when I started saying them she was so happy to help them. She will also be donating half of what she is paid back to Duke. I am so proud of the wonderful, caring, beautiful (inside and out) little girl that she has become.
Tomorrow, Mackenzie will have her end of year pool party. I am having coffee with 6 good friends from her school before the party. Howard will be working. Our day will appear to be normal, but it is far from it...
It will be 6 months since Ashleigh was called to heaven. So, again, I play the number game...what is 6 months made up of. Well, it has been a half of year since we held Ashleigh, 26 weeks since we kissed her pouty little lips, 182 days since we heard her sweet noises, 4382 hours since we smelled her stinky breath, 262,974 minutes since we entered into this painful place, and it has been 15,778,463 seconds since Ashleigh Ryann earned her wings and was healed.
Thursday, May 15, 2008 8:07 PM CDT
I finally finished reading my first "grief" book. It was a great book and helped me understand alot of what we were feeling as a family.
I feel like some people think I should be over this, it has been six months and that I should be fine. The truth is that I am not fine.
This is the best why that I have heard this put...
If a person was injured and was in ICU, you would not expect them to do the things they did before. Their body needs to heal. The same is for a parent who has lost a child. The emotional trauma to their body goes far deeper than anyone will ever know, and they can not expect too much from themselves, nor should others.
My friend, Colleen, told me that she thought Christmas will be harder this year. The shock of loosing Ashleigh was too fresh to feel the pain and emptiness that we struggle with everyday. I am beginning to think she is right. Mother's Day was hard. I snuggled with the bear that holds Ashleigh's ashes for several hours before I could get up, most of the day is a daze. Part of me was missing and she will never return to me.
The book I just finished also talks about parents who have been caring for a terminal child, the day they receive the diagnosis is the day they start grieving. I agree. We are at our anniversaries of that dreadful day...the first MRI, the day she was admitted looking for what was wrong, the day we sat in front of the doctors while they told us that our baby was dieing. We are again, at that time of year that we have struggled with for the last five years. I can still tell you what the doctors were wearing, what the room looked like, how we rode home in silence...
I never thought there could be anything worse than that day, now we have November 29th.
The book also had parents who talked about how to find your new life...they all said it takes 2-3 years of the acute grieving before you can pick up and say "this is what I am going to do in honor of my child". I am hoping that is what I will be able to do by working with Dr. Kurtzberg. I can only hope that everyday, I can speak her name and not have people uncomfortable, I can tell them about a little girl who fought hard and blessed all of those who took the time to know her. How she is a hero to many...some who have never met her. How she has taught the doctors so much and could help another child. Ashleigh amazes me. I hope one day we can move past this pain and find a way to honor her. I hope that I can stop hiding my tears in the shower, I can write a journal entry without feeling so broken, I can only HOPE that one day I hold my baby and she can say "momma" on Mother's Day.
Ashleigh would be five and a half today, two weeks from today it will be six months since she flew to heaven.
I would do anything for those sloppy kisses!!
I received this today, after I posted the above message. All I can say is THANK YOU, for your understanding and kindness. You always amaze me.
from the book "Grief Therapy":
----Respect the power of grief. Know that it can affect you psychologically, physically, and spiritually in intense and sometimes surprising ways. Stay gentle with yourself. ----Be open to the pain of your broken heart. God...and caring people...will enter through it's brokenness.
----Remain open to the hurt. You may think it’s easier to suppress the pain or avoid it with distractions and busyness. But eventually your emotions will surface; grief will demand your attention.
----Cry. Your tears testify to your love. And tears that spring from love help bring healing and renewal. Let your tears express the harsh reality of your loss. Let them begin to wash away the sadness and pain.
----Give yourself time to grieve. It may take several years just to accept the finality of a loss, that someone is gone forever, and even more to work through your emotions.
----Forgive yourself: for being angry or disappointed with others, including the one who died and left you; for being powerless to have prevented the loss.
---- Your loss is not God’s punishment or God’s attempt to test you. Know that God shares the hurt in your heart and wants to lead you to new hope and peace; know that God grieves with you.
----When some persons’ attempt to comfort you only deepens the hurt, forgive them for not understanding. Later, when you comfort someone else, remember what not to say.
----Be with those who also are grieving. As you tell your stories, you will share an understanding of the heart that is deeper than words.
----Learn from those who have experienced healing after loss. Their survival is reassuring proof that you, too, will endure. Their understanding and empathy are their greatest gifts to you.
----Pray for and with the one who has died. The love between you is a spiritual bond that death cannot sever. What is most precious to us is not always what we can see or touch or be near.
----Mourn not just for the loss of what was, but also for what will never be. And then gently, lovingly let go.
----Make small beginnings towards reshaping your life without the one you loved. Your efforts are seeds of hope that you can cultivate into fruitful tomorrows.
----Anniversaries, holidays, birthdays, and more...the times that used to mean only joy and celebration. These can now be among the toughest of days. Observe them with care and simple ceremony to ease the pain.
----In some ways, you never get over a significant loss. It inevitably changes you. You can choose whether that change is for the better.
----When you find yourself doubting your capacity to recover; be patient and realize that the grief process, though lengthy, ultimately does bring healing.
----Let yourself feel good again. Laugh with friends, have fun. Living your life to the fullest is not betrayal of memory. Your loved one would want only the best for you.
----There may be a small place within you that remains hollow. Value it. This quiet, abiding feeling may be one of God’s ways of sustaining the connection to your precious loved one.
----Tackle the emptiness. When you feel that your loss has drained your life of all direction or meaning or joy, present your nothingness to God. God has never been closer.
----Life matters, no matter how long or short. And it lasts. Trust that God’s promise of unending life is real. And trust that your life today matters, too.
----It may seem as if you’ll never feel truly happy again. But be assured that you will and your joy will have a richness and a depth that come from your having known profound pain and profound healing.
----There will come a time to remind yourself of your reasons for living. You have a future worth enduring for, and you deserve to find a renewed sense of purpose and pleasure in your life.
----Your grieving is among the most sacred and the most human things you will ever do. It will plummet you into the mystery of life...and death...and the resurrection.
Honor it.
Sunday, May 11, 2008 10:58 AM CDT
Dandelions from Heaven
Mothers day is coming And I wanted to send you a sign
something you can tell others; "Is from an angel of mine
So I searched the heavens high and low for that perfect thing....
And low and behold I found it.... And a smile I hope it will bring.
So when you look to the heavens and see the yellow stars in the sky
Just think of me .... your angel... in the heavens way up high
And just imagine those stars; are dandelions up above.
Yes! Dandelions are also in heaven; which you know how much I love.
So on this mothers day and you awake and feel blue....
You will notice those yellow stars... are no longer in view.
So look to the meadows and the dandelions you see...
Are the ones I've tossed down this mothers day from me.
And when you find a dandelion that has turned from yellow to white;
Youre supposed to make a wish and then blow with all your might.
For you will be blowing kisses to me in heaven above....
And I will be catching them and blowing them back sent with all my love.
Please know that l am with you.... on this mothers day....
And also in the days ahead.... God and I will never stray.
We will be with you in the morning ....when you awake and see the sun....
We will be with you when you say your prayers when the day is done.
For God and I will never be very far from your side....
For I can now be everywhere.... and God will be your guide.
So.... remember when you see dandelions it is your guarantee
That I am always close to you.... for dandelions are free to roam ....now just like me.
I will always be with you mummy....
Happy Mothers Day....
Love your angel in heaven.
Friday, May 9, 2008 9:45 AM CDT
Today may be one of those entries you all are use too...long!
Last week, several family memebers and friends came to town and walked in honor of Ashleigh at the Rainbow of Heroes Walk at Duke. We sincerely thank each and everyone of you who walked and donated for Ashleigh's Army!! Thanks you. We look forward to doing it again next year. Again, you are all welcome to walk and to a party at our home in celebration of all of the children who travel the transplant journey, regardless of diagnosis. It will again be held the first Saturday of May next year!!
The weekend started early Friday morning with our first guess flying in, we cooked all day and then headed out to do some fun shopping. While my sisters, niece and I were shopping, my husband (okay, you all know him as Howard) was setting us for a surprise party!! Yes, my birthday is May 17th and Howard took advantage of everyone being in town and had a party for me!! It was wonderful seeing everyone, but it took me a whole lot of time to figure out how he pulled it off.
Saturday morning, Ashleigh's Army gathered at the walk. 35 of us!! It was wonderful seeing so many of our friends walking in their bright yellow shirts!! It was also awesome seeing dear friends that we have traveled this journey with. Crying with people who know our emptiness and who love us anyway!!
Saturday night, we had a open house, everyone was welcome to come hang out, eat, and enjoy some time together. It was great.
Sunday, everyone was gone around 3. Chris, Carol and Erin were the last to leave. Howard and I sat and talked about how lucky we are to have so many wonderful people who care so much for Ashleigh and our family. Thank you!!
I should be starting my new job in a few weeks. I will be posting more about it but for now I am just learning some of the details. Yes, it will be with Dr. Kurtzberg. I am honored to work with the team that did so much for Ashleigh and our family and I can only hope I give back what they have given to us.
Mackenzie is finishing up school soon. She will be heading to 3rd grade!! I am a little taken back by how much she has grown. She is my joy and strength, she carries me through this life without Ashleigh.
Howard will be starting a new job, still military but alot closer to home!! Thank you to the Wallace family for everything you have done for Howard. Their son, Sean received a transplant at Duke also, he is doing great and is so so cute!!
Howard's grandmother is very sick. She has blood clots in her lungs and it is driving me crazy being down here. There is just so much that I don't agree with that the doctors are doing...you know, Jane...the lioness...still comes out in me!! I just have alot of questions.
We are going to New Jersey for Mother's Day weekend. Leaving tonight. We want to see Howard's grandmother. I am not happy about not being with Ashleigh's things for my first Mother's Day without her, but...
I am sure I had more to tell you, I have to get somethings done before our flights tonight.
Tuesday, April 29, 2008 5:27 PM CDT
Thank you all who came here today and left messages. It has been a difficult day. It seems like forever since we have held Ashleigh in our arms, yet it feels like yesterday that we said good-bye. If that makes any sense.
The pain of loosing her is so fresh and makes it difficult to even breathe at times. Yet, I feel like it has been so long since I smelled her or did her hair.
Today was HERO day at Mackenzie's school. I listed a few ideas for her to dress up as...a soldier, Dr. K, a colonial woman. She picked her sister. So fitting for the day. She wore a white polo shirt, blue sweater, jean capris with butterflies on them. Her hair was done in pig tails and Ashleigh's curly bows. We put blush on her to make her face flush. She said her sister is her HERO. I am not sure that she realized the date, she usually does, but she did not say anything today about it.
Saturday is the Rainbow of Heroes Walk. Thank you all for your donations for Ashleigh's Army. Thursday is the close of online donations. If you still would like to donate please go to www.rainbowofheroes.org and donate to ASHLEIGH'S ARMY.
Please keep Howard's grandmother in your prayers. She is going to be 90 in July and she is having a difficult time right now. She was very close with Ashleigh and is missing her deeply. I have wonderful pictures of her holding Ashleigh...which she did every chance she got!!
Saturday, March 29, 2008 7:02 PM CDT
4 months since Ashleigh left us.
Thank you for all for your post and emails today.
Mackenzie went to a birthday party today, Howard worked 1/2 a day. Our life happened but our sadness was there, deep inside our hearts.
We are one month away from the Rainbow of Heroes Walk. As you all know, May 3rd,
Duke Pediatric Blood and Marrow Transplant Program will be holding their annual
walk in honor of all their patients. All proceeds will help support family
programs for patients receiving bone marrow transplants.
We formed "Ashleigh's Army" in honor of our sweet Ashleigh's journey. Ashleigh
received her transplant on August 27, 2003 when she was 9 months old. Before her
transplant, we were told that Ashleigh would not live to see her second
birthday. Ashleigh turned five on November 15, 2007, she was healed in Jesus's
arms on November 29th, 2007. We are forever grateful for the care that we
received from Joanne Kurtzberg and her team at Duke.
Since we are at our one month mark we need to start preparing our team!
For those of you who have already joined our team:
1. Please confirm t-shirt sizes, shirts will be handed out the week before the
walk!!
2. Please let us know how you are doing with your sponsors, remember all donations can be handed in the day of the walk or donations can be made
online. Remember to ask donors to support "Ashleigh's Army"
3. Please let us know if you are joining us for a celebration of Ashleigh's
life at our home after the walk.
4. If you will be flying in for the walk, please send us your flight information
so we can arrange transportation for you
5. Our out of town guess, please send us your hotel information, we will be
delivering your "Ashleigh's Army" t-shirts, along with directions to the Rainbow
of Heroes Walk and our home.
We thank you all for your support of our family and helping us keep Ashleigh's
memory alive!
With HOPE,
Michelle
http://www.rainbowofheroeswalk.org/
http://www.caringbridge.org/nj/ashleigh.ryann
Sunday, March 16, 2008 4:31 PM CDT
Some days
I want to die
Just to be with you again.
Then I remember life's beauty
And I live to honor you.
Some days
I wish for one more day with you,
One more moment to hold you, touch you, kiss you.
Then I realize "one more" would never be enough
And I choose to cherish "the ones" I had.
Some days
You invade my every thought.
All I see is your beautiful face, your perfect body
And I long to hold you again…
But instead I must hold onto memories.
Some days
I think of all that could have been
All that should have been, with you here…
And my heart breaks without you –
Then your sister makes my heart soar.
Some days
I feel such unbearable sorrow
I miss you so –
And I know I'd rather feel that forever
Than to never have known you.
Some days
I see families who have not endured this pain.
I envy their pure, unadulterated joy.
Then I realize your life has made my joys bigger, my will stronger
As I rise above the sorrow of your death.
Some days
I'd give anything to have you here,
To see your precious face and give you all my love.
Then I remember that love
Is all you ever knew.
Some days
I glow with pride as people speak of you
They send you gifts, balloons, notes –
All Heaven-bound
And I smile because you are known to them, part of them, loved by them.
Some days
I am so overjoyed to have your sister in my life
That for a moment I can't imagine being happier…
Then I think if you were still here
My joy would be uncontainable.
Some day
Perhaps we'll all be together again.
My girls will be reunited,
My husband's spirit will soar
And finally I will feel whole.
Some day
My precious, beloved daughter,
I will dance with you in Heaven
And I will never let you go.
Friday, March 14, 2008 7:20 PM CDT
Okay...I think we fixed the guestbook problem. When you sign in you will have to enter the code from the box. That will stop spam. We will not have to lock the site!
Mackenzie started spring break today. We are taking her to Williamsburg for a couple of days next week.
Howard is off next week.
Last night, we had dinner with another transplant family. Jared Kerr is in for his 9 month studies. They are from New Jersey, they were wonderful to us and brought us some food that we have been missing. Levi's family also came over for a visit. I was wonderful to see two transplant families doing so great.
We gave Jared some toys that we bought for Ashleigh for Christmas. It was a test for myself to see how it would be to give her stuff away. Today, Katherine (Jared's mom) came over and we gave her some more of Ashleigh's things, including her suction machine,versa form pillow and bathseat. I know Ashleigh would want us to give her things to children that would benefit from it. Jared is a cool kid and we know he will love these toys! Katherine is an awesome mom and a great friend. Sending huge hugs to the Kerr family... http://www.caringbridge.org/visit/jaredkerr
Wednesday, March 12, 2008 9:13 AM CDT
I may have to lock Ashleigh's website again. It is getting spammed with porn in the guessbook.
If I do the password will be the same as last time, if you do not have it, please email me and I will send it to you.
Saturday, March 8, 2008 10:22 PM CST
We took Mackenzie and her friend to the movies to see College Roadtrip. We had a good laugh that was going to be Howard when Mackenzie is ready for college...times 10!
Howard said he would be fine because we are only 6 miles from Duke. I asked what he would do if she went to NYU. He said we would just sell our house and move with her! Lord, help this poor child.
At the end of the movie, I cried. First, I realized that Ashleigh would not be going to college. Her leaving us was for much more...
Then, the idea of Mackenzie being that grown up!
Howard and I went on a date Friday night. Mackenzie was at a sleepover.
Wednesday, March 5, 2008 10:18 PM CST
Thank you all for your support and donations for Ashleigh's Army. I received an email tonight about a message that was posted on the bottom of a donation to Duke. It simply said "In memory of a little girl who I never met but has touched my heart so deeply". I am sure you know who you are that wrote this, I can only say thank you for honoring Ashleigh.
I also ran into another transplant mom at Target this weekend. Even though her child had a transplant, they asked if they could join Ashleigh's Army and walk in honor of Ashleigh. She was an inspiration to so many. Thank you all who have joined the team!!
Our team is growing and I am looking for a picture to put on our shirts so I can get the order in. We are less than two months away!!
Friday, February 29, 2008 6:31 AM CST
Tonight at 10:00 pm, it will be 3 months since Ashleigh earned her wings.
Did you ever wonder what 3 months is made up of...
It is 13 weeks, 91 days, 2184 hours, 131,040 minutes, about 7,862,400 seconds.
No words today, just tears.
Thursday, February 28, 2008 8:26 AM CST
"A Pair of Shoes"
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 this world.
Some woman 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 about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these 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.
Tuesday, February 26, 2008 9:45 PM CST
A week of mixed emotions...full of highs and lows...good and bad. That sums up our family.
Howard got more days off last week, we are hoping it will continue.
Mackenzie has been keeping us busy.
We had a weekend of rollerskating, bowling, lunch with friends.
Friends keeping me busy again, went to lunch with Jen today, Kelly tomorrow, movie plans with Jayna. I have awesome friends!! My question is how are parents suppose to live when part of them died with their child. November 29, part of us died with Ashleigh.
Tuesday, February 19, 2008 10:47 AM CST
Thursday...
Happy Birthday, Howard!!!
Wednesday update at the bottom...
Tuesday...
Someone asked me what it was like for us...I am not sure words can explain the war of emotions that go through our minds and hearts everyday. HAPPY, Ashleigh is healed, SAD, because I want her with me, ANGER, for the people who ignored her, CONFUSED, we didn't see it coming, LONELY, don't know who to talk to about Ashleigh, GUILTY, because our life goes on even without her...the list can go on and on. There just is not enough words to describe this...
We finished decorating Ashleigh's room yesterday. Howard, Mackenzie and I spent much of the day, hanging pictures, curtains, looking at pictures, books and snuggling with her bear. We shed a few tears and laughed about the silly things Ashleigh would do and all the things she can do now.
We hung some pictures in Mackenzie's room and the guest room also.
Mackenzie had a hard night. She couldn't sleep, she said she was sad. We talked about what could be making her sad and she did not think it was Ashleigh. She had a rough night sleep but seemed better this morning.
Duke the dog...is not a dog...he is a puppy. A 55lb 6 to 9 month old lump of black puppy! I do not have the energy that is required to train him, but I don't want to give him up either. The good news is that since he is a pup, he can be trained. He is not a out of control older dog.
We had a blood draw today, how appropriate. A blood draw on a Tuesday.
I would do anything to be sitting in clinic for hours today. To see Sue and Dr. K, all our favorite nurses...
Well, we have good days and bad days...I would say lately, the last week or so, has been more bad than good. Not sure why...
I just know that I am empty without her.
Wednesday update...
Good day today! Had dinner with a friend. Howard and I are talking about taking a trip to Williamsburg and some friends might join us! We were talking about going to NJ over Easter break but I think we may just stay put now.
Had a couple of great friends call and reassure me that my feelings are normal. A awesome project to work on! Although it started out to be a little rough...it ended up being a okay day!!
******************************
Late night posting...
Tonight I was laying with Mackenzie in bed. She said "Mom, today was the 20th" I said "I know". She said "In 9 days it will be 3 months since I saw my sister". I said "I know, are you okay?". She said "I wish she was in her room sleeping". I said "me too". She said "maybe she will visit us in our dreams". I said "I hope so". She said "well, let's hurry up and get to sleep, Good-night". I said "good night, my love".
I didn't know she was keeping track of the time, too.
Tuesday, February 12, 2008 8:25 AM CST
Sorry I locked the website for a few days, I just wanted to protect it from negative comments.
We are doing okay. Howard works a lot. I worry about him. He is working 14 hour days, 6 days a week. Not by choice. It makes it hard for our family to have time together. Mackenzie was scared he was going back to Iraq because he is never here. I wish his current commanders would be more understanding about what is happening at home.
Mackenzie is doing well. We are checking out new horse farms for her. I also need to look into summer programs for her. She has not been feeling good. She had a fever last week, but nothing came of it. She seems very worn out. We all went to bed at 8:30 last night.
I have been busy during the day with Duke the Dog. My job will not start for about a month but Duke the Dog needs alot of help. He is going to the vet today, but he is have seperation problems, potty training issues, chewing issues. Let's just say...he is a handful.
We think and talk about Ashleigh constantly. Mackenzie said she thought Ashleigh was eating cinnamon ice cream last night. We open and close her blinds each day and night, we play music in her room. We try to remember that she is healed and without pain but we want her back with us so bad. I still feel like this was all a dream. I can't believe she is really gone.
We are working hard on the Rainbow of Heroes Walk. Anyone who is planning on attending as Ashleigh's Army, please send me your t-shirt sizes. I need to place the order the first week in March. We are doing great with our fundraising, thank you to all of you who have donated. We get very excited when we see another donation for Ashleigh's Army. We still have a ways to go to reach our goal. We ask that you send out the link to your friends and family and ask them to support Ashleigh's Army.
Anyone who can not make the walk, but would like to purchase a shirt, please know you are welcome to...just email me your name, address, size and number of shirts you would like. We are also going to be selling awareness braclets for the walk...all money will be donated to Duke Pediatric Blood and Marrow Transplant Family Support Program. They are an incredible group of people who have supported our family and many others through this difficult journey.
My favorite thing the program offers is a sibling party. Mackenzie went with a group of siblings for a pizza party where they made crafts and played. They learn that they are not alone and they make new friends.
I also love that they are able to provide meals for the families in patients along with haircuts, massages and scrapbooking. Remember, families are in the hospital for many months at a time so these stress relievers are needed.
Please help us keep these programs going by supporting the Rainbow of Heroes Walk and Ashleigh's Army.
http://www.rainbowofheroeswalk.org/modules/gifts/donate.php/?team=Ashleigh\'s Army
Tuesday, January 29, 2008 8:43 AM CST
Wednesday, January, 30, 2008
Do you believe in fate? All things have a purpose? At Ashleigh's services, Jenn (Best Speech therapist in the world) read the book "Bad Dog, Marley". Jenn has a dog, who is a black Lab, named Marley. She would bring the dog to therapy to play with Ashleigh. Whenever she did not bring the dog, Ashleigh would give attitude.Last night,two months after Ashleigh earned her wings, Howard arrived back at his car after being out at a "FOB" (base for training soldiers). Laying in front of his car was a black dog. He has one blue eye, one brown. He was in the middle of no where, no collar, nothing to identify him. Howard brought him home. Mackenzie named him Duke. If someone claims him we, of course, would give hime back. Otherwise, I guess we have a new family member Thank you, Ashleigh, for sending us a little happy reminder of your awesome spirt. He has been great with everyone, very loving, playful, well behaved.
Thank you Jessica for the poem. I put it on the front page for everyone to read. Jessica, you have been an awesome supporter. Thank you for helping us educate about Krabbe and Newborn Screening.
A LETTER FROM HEAVEN
"To my dearest family, some things I'd like to say.
But first of all, to let you know, that I arrived okay.
I'm writing this from heaven. Here I dwell with God above.
Here, there's no more tears of sadness; here is just eternal love.
Please do not be unhappy just because I'm out of sight.
Remember that I'm with you every morning, noon and night.
That day I had to leave you when my life on earth was through,
God picked me up and hugged me and He said, "I welcome you."
"It's good to have you back again, you were missed while you were gone.
As for your dearest family, they'll be here later on.
I need you here badly, you're part of my plan.
There's so much that we have to do, to help our mortal man."
God gave me a list of things, that he wished for me to do,
and foremost on the list, was to watch and care for you.
And when you lie in bed at night, the day's chores put to flight,
God and I are closest to you... in the middle of the night.
When you think of my life on earth, and all those loving years,
because you are only human, they are bound to bring you tears.
But do not be afraid to cry; it does relieve the pain.
Remember there would be no flowers, unless there was some rain.
I wish that I could tell you all that God has planned.
But if I were to tell you, you wouldn't understand.
But one thing is for certain, though my life on earth is o'er.
I'm closer to you now, than I ever was before.
There are many rocky roads ahead of you and many hills to climb;
But together we can do it by taking one day at a time.
It was always my philosophy and I'd like it for you too....
That as you give unto the world, the world will give to you.
If you can help somebody who's in sorrow and pain,
then you can say to God at night... "My day was not in vain."
And now I am contented.... that my life has been wothwhile,
Knowing as I passed along the way, I made somebody smile.
So if you meet somebody who is sad and feeling low,
Just lend a hand to pick him up, as on your way you go.
When you're walking down the street, and you've got me on your mind;
I'm walking in you footsteps only half a step behind.
And when it's time for you to go.... from that body to be free,
remember you're not going.... you're coming here to me.
Tuesday's UPDATE:
Two months ago, our sweet Ashleigh Ryann earned her wings and went to heaven.
This phrase, "moving on without her", has been bothering me lately. How in the world do you move on without HER? She is the spark in our family. It came to me a few days ago, we aren't moving on without her. She has preceeded us to the next phase and we are moving toward her. She is now leading us. For some reason, this turnaround in thinking is making my heart more peaceful.
I stole this poem from our friend, Alexia's website. Alexia earned her wings the day before Ashleigh. I just imagine Alexia and Ashleigh in heaven, causing some trouble or doing crafts, healed. www.caringbridge.org/southamerica/alexia
“My Mom Lies”
- Author Unknown
My Mom, she tells a lot of lies
She never did before.
From now until she dies,
She'll tell a whole lot more.
Ask my Mom how she is
And because she can't explain,
She will tell a little lie
Because she can't describe the pain.
Ask my Mom how she is,
She'll say, "I'm alright".
If that's the truth, then tell me,
why does she cry each night?
Ask my Mom how she is,
She seems to cope so well.
She didn't have a choice you see
nor the strength to yell.
Ask my Mom how she is,
"I'm fine, I’m well, I'm coping".
For God's sake Mom, just tell the truth
just say your heart is broken.
She'll love me all her life,
I loved her all of mine.
But if you ask her how she is,
She'll lie and say she's fine.
I am Here in Heaven.
I cannot hug from here.
If she lies to you don't listen,
Hug her and hold her near.
On the day we meet again,
We'll smile and I'll be bold.
I'll say, “You’re lucky to get in here, Mom
With all the lies you told!"
Monday, January 21, 2008 10:12 AM CST
Update 1/23 ~~ Mackenzie's appointment went well. Dr. Escolar was wonderful and Mackenzie loves going there. So, her leg pain is severe growing pains. Nothing serious. She is also flat footed, which can add to the leg pain. We will wait until she stops growing and consider surgery at that time. For now, she is going to were arch builders in her shoes. Her motor skills are improving. Her IQ is above average. Her head aches are most likely Mackenzie needing a break, not drinking enough and her not communicating how she is feeling properly. She had a complete neurological work up, which was clear. I then sat and talked to Dr. Escolar about Krabbe reseach, carrier status, enzyme levels and new medications for treating Krabbe. We talked alot about Ashleigh and her skills that she was able to gain. Tomorrow, I will meet with Dr. Kurtzberg.
We are making more plans for the Rainbow of Heroes walk. First, let me thank the people who are signing up to walk with us and who have made donations. We have selected our t-shirt color ~~ it will be yellow. In honor of Ashleigh's color choice for her bedroom.
We are also looking into a couple of options to increase fund raising. We would like your opinion. The choices are: pink and yellow braclets that say "Ashleigh's Army" with two butterflies on it or the same think but on a keychain. So, please your opinions are important to us...please email me at moocow517@comcast.net to let me know what you think!! Any other suggestions are welcome. I did have someone offer to buy Mackenzie's artwork!! That was cute! All profits will go to Duke Pediatric Blood and Marrow Transplant Program Family Support at the Rainbow of Heroes Walk
I don't know how many of you have gone to the Rainbow of Heroes website. If you go to "Images", then click on "2007" there are some pictures of Me and Ash together and Mackenzie receiving the "Sibling of the Year" award. The song playing is by Mary Chapin Carpenter, called "Between Here and Gone", below are the lyrics.
Good-night.
Tonight, the moon came out, it was nearly full.
Way down here on earth, I could feel it's pull.
The weight of gravity or just the lure of life,
Made me want to leave my only home tonight.
Now I'm just wonderin' how we know where we belong.
Is it in a photograph, or a dashboard poet's song?
Will I have missed my chance to right some ancient wrong,
Should I find myself between here and gone?
Now I could grab my keys, clear out in my truck,
With every cent on board bringing me their luck.
An' I could drive too fast, like a midnight sleeve,
As if there was a way to outrun the grief.
Now I'm just wonderin' how we know where we belong.
In a song that's left behind in the dream I couldn't wake from.
Could I have felt the brush of a soul that's passing on,
Somewhere in between here and gone?
Up above me,
Wayward angels,
A blur of wings and grace.
One for courage,
One for safety,
One for "just in case".
I thought a light went out, but now the candle shines.
I thought my tears wouldn't stop, then I dried my eyes.
And after all of this, the truth that holds me here,
Is that this emptiness is something not to fear.
Yeah, I'll keep wondering how we know where we belong,
After all the journeys made, and the journeys yet to come.
When I feel like giving up instead of going on,
Somewhere in between.
Yeah, I'm just wondering how we know where we belong.
Is it in the arc of the moon, leaving shadows on the lawn?
In the path of fireflies and a single bird at dawn,
Singing in between here and gone.
UPDATE: Thank you David Leary for making Ashleigh's Army the first team to receive an online donation for the 2008 Rainbow of Heroes of Walk! I received an email from Family Support informing me of the donation! "the first online donation for the 2008 walk goes to Ashleigh's Army! Thought you'd like to know." Yeah, for Team Ashleigh's Army!!!
Wow, the Rainbow of Heroes Walk is in full swing and I have to say that I am shocked by the response we are already getting. We have friends coming in to support us and honor Ashleigh's jouney. I have already received emails from people in Texas, New York, Pennsylvania, New Jersey and North Carolina! Thank you all so much for loving our Ashleigh.
Information for the walk will be posted above soon, but you can log on to http://www.rainbowofheroeswalk.org/ to read about it and make donations...our team will be called "Ashleigh's Army" and we will be wearing yellow t-shirts. Mackenzie picked the yellow because Ashleigh picked yellow for her bedroom.
We invite you all to join us for a great day and a party at our house afterwards, all in celebration of Ashleigh!
Okay, Dr. Escolar tomorrow and Dr. Kurtzberg on Thursday.
I received this email this morning and wanted to share it with you...
To Honor You
By Connie Kiefer Boyd
To honor you, I get up every day and take a breath and start another day without you in it.
To honor you, I laugh and love with those who knew your smile and the way your eyes twinkled with mischief and secret knowledge.
To honor you, I take the time to appreciate everyone I love. I know now there is no guarantee of days or hours spent in their presence.
To honor you, I listen to music you would have liked and sing at the top of my lungs with the windows rolled down.
To honor you, I take chances, say what I feel, hold nothing back, risk making a fool of myself, dance every dance.
You were my light, my heart, my gift of love from the very highest source.
So everyday, I vow to make a difference, share a smile, live, laugh and love.
Now I live for both, so all I do, I do to honor you.
Saturday, January 19, 2008 9:37 PM CST
We are back from Disney...we had a good time. We talked about Ashleigh alot, we cried a few times, we enjoyed our time with Mackenzie. Our first day we went to Animal Kingdom, were we saw the show "Festival of the Lion King", near the middle they invite children to join them to shake instuments and walk in a big circle. One of the dancers in the show took a little boy in a wheelchair and was pushing the chair around. The little boy was so excited. I cried. When we saw, JoJo the Circus Clown, I filled up. Seeing a little girl hug the characters felt like someone was sitting on my chest. The last day was harder, there was a Make a Wish family there and I just thought of Ashleigh alot. We never made her wish. We were going to get her a hot tub for therapy. We also realized that Ashleigh could have never handled Disney. I was sad that she never got to go, but after being there we realized she would have been exposed to too many germs, too many noises, load, sudden noises, flashing lights, crowds of people. It would have been too much and she would have either went to sleep through it or had seizures.
Mackenzie had alot of fun, she had her face painted and enjoyed being with us. She went on rides, had her picture taken with the characters, got some autographs. She talked about Ashleigh several times, just pointing out what Ashleigh would have liked or what would be dangerous to Ashleigh.
The Rainbow of Heroes Walk is planned for May 3rd. We are asking for your support...if you would like to join us and walk in honor of Ashleigh. Please email me soon. We need shirt sizes and plans need to be made for hotel rooms soon. You can read about the walk and the events that day by logging onto www.rainbowofheroes.org
If you would like to make a donation in Ashleigh's memory, log on to the website, click donate, fill in your information and click on "Ashleigh's Army".
We set a goal to raise $10,000, the money benefits the Family Support Program at Duke Pediatric Blood and Marrow Transplant.
For our long time followers, you will remember me saying that being in patient at Duke was like a mini vacation. Families are in there for months at a time....it is hard and very isolating. The team there has many "specials" to help care givers deal with this new life style. I have learned how to scrapbook, received a massage and hair cut. Ashleigh has gone to craft classes and received a haircut. The keep things as normal as possible, providing meals, parking tickets, beads for celebrating the patients accomplishments, and many other things to support both the patients and their families.
We invite you all to join us, walk with us, raise money and awareness with us and celebrate Ashleigh with us.
We are also looking into setting up a blood drive and marrow registration in Ashleigh's memory. Countless times, Ashleigh received donating blood products...we want to honor those times by giving back. We also hope to bring awareness to the need for donated cord blood. More details will be posted as soon as we set it up.
We had a little snow here today. Ashleigh touched the snow twice. Once in New Jersey and once in North Carolina. It was cold and she pulled away both times. We had fake snow for her to play with during therapy.
Tuesday is Mackenzie's appointment with Dr. Escolar, Thursday we meet with Dr. Kurtzberg. I will update after each appointment.
I wish I could say this was getting easier, but it just is not true. Mackenzie woke up this morning and went in Ashleigh's bed to read books to her sister, really she was reading them to Ashleigh's ashes. I layed in bed listening to her talk to her sister. She then came into bed with us to read to all of us, including Ashleigh.
Good Night.
Friday, January 11, 2008 11:44 PM CST
It has been too long since I have held Ashleigh. Too long!!
This week has been hard. I don't know why.
Our life seems to continue even without her here, but then I look at her room or I smell her clothes that she was wearing the night she died and it feels like we were hit by a ton of bricks.
We are going to Disney on Sunday. We thought it would be nice for Mackenzie to go with both of us and being in the house gets to be hard.
When we return...Mackenzie is going to see Dr. Escolar. She is having leg pain again. She is also going to talk about her feelings with her new "friend" there.
We are also going to talk with Dr. Kurtzberg about the autopsy results and a job idea for me. I will update about both of them after.
I received this as an email and I felt like it was perfect...
The Gap
Michael Crenlinsten
The gap between those who have lost children and those who have not is profoundly difficult to bridge. No one, whose children are well and intact can be expected to understand what parents who have lost children have absorbed and what they bear. Our children come to us through every blade of grass, every crack in the sidewalk, every bowl of breakfast cereal. We seek contact with their atoms, their hairbrush, their toothbrush, their clothing. We reach for what was integrally woven into the fabric of our lives, now torn and shredded. A black hole as been blown through our souls and, indeed, it often does not allow the light to escape. It is a difficult place. For us to enter there is to be cut deeply, and torn anew, each time we go there, by the jagged edges of our loss. Yet we return, again and again, for that is where our children now reside. This will be so for years to come and it will change us profoundly. At some point in the distant future, the edges of that hole will have tempered and softened but the empty space will remain – a life sentence.
Our friends will change through this. There is no avoiding it. We grieve for our children, in part, through talking about them and our feelings for having lost them. Some go there with us, others cannot and through their denial and a further measure, however unwittingly, to an already heavy burden. Assuming that we may be feeling "better" six months later is simply "to not get it." The excruciating and isolating reality that bereaved parents feel is hermetically sealed from the nature of any other human experience. Thus it is a trap – those whose compassion and insight we most need are those for whom we abhor the experience that would allow them that sensitivity and capacity. And yet, somehow there are those, each in their own fashion, who have found a way to reach us and stay, to our comfort. They have understood, again each in their own way, that our children remain our children through our memory of them. Their memory is sustained through speaking about them and our feelings about their death. Deny this and you deny their life. Deny their life and you no longer have a place in ours.
We recognize that we have moved to an emotional place where it is often very difficult to reach us. Our attempts to be normal are painful and the day to day carries a silent, screaming anguish that accompanies us, sometimes from moment to moment. Were we to give it its own voice we fear we would become truly unreachable, and so we remain "strong" for a host of reasons even as the strength saps our energy and drains our will. Were we to act out our true feelings we would be impossible to be with. We resent having to act normal, yet we dare not do otherwise. People who understand this dynamic are our gold standard. Working our way through this over the years will change us as does every experience – and extreme experience changes one extremely. We know we will have recovered when, as we have read, it is no longer painful to be normal. We do not know who we will be at that point or who will still be with us.
We have read that the gap is so difficult that, often, bereaved parents must attempt to reach out to friends and relatives or risk losing them. This is our attempt. For those untarnished by such events, who wish to know in some way what they, thankfully, do not know, read this. It may provide a window that is helpful for both sides of the gap
Thursday, December 27, 2007 9:16 AM CST
Tonight at 10 pm, it will be four weeks since Ashleigh died. It seems like it has been forever. Still, we crave the sloppy kisses, the cuddles, we crave Ashleigh. Saturday the 29th is 1 month. I can't believe she is really gone. Last night I had a dream that she was kidnapped and we were searching for her because we needed to give her her seizure medications.
People tell us that she is in a better place, she is healed, she is blessed to have had us. Please understand I am not being mean...but none of those words help our pain. We know she is healed, we know she is with Jesus and so many other children that have gone before her. We know for her it is most likely better...but for us the pain is too fresh and too deep to feel that right now. Maybe in time we will see it more clearly...but not now. I want my baby back any way I could have her. She was smart, happy, and loved. As for her being blessed to have us. We are the ones who were blessed. She gave us more than anyone could ever see or know. She gave us meaning and purpose, she gave us love, happiness and stronger faith. She is and will always be my everything, my love, my hero. We are the ones that were blessed, as was everyone who truly opened their hearts and minds to the new wonders that Ashleigh gave. The ones who did not take advantage of Ashleigh's gifts are the ones who are less fortunate, and have missed out on her beautiful light, her blessings.
Mackenzie started her Christmas morning around 9:00am!! Thank God it was not at the crack of dawn. She brought down the bear with Ashleigh's ashes in it. Mackenzie watched as I opened presents, Howard opened presents...then she finally opened her presents! She is much more patient than I was at eight.
As we took down her stocking, Ashleigh's was still hanging. It was like someone knocked the wind out of me. I just stared at it. Howard quickly hung ours back up with Ashleigh's.
She has been asking about different religions and believes, so Dr. Kurtzberg sent her some books about the Jewish religion. If anyone has any other suggestions about different believes and cultures that she could learn about, please let us know. Dr. Kurtzberg and Sue are still very involved with our lives...not more than a day goes buy that I do not talk or email with one of them.
Yesterday, we left for a little journey around the northeast. We are in Lancaster, Pa right now. We brought Mackenzie up to see a play called the Miracle of Christmas. We are heading to New Jersey to visit friends and family. We are might go to Williamsburg, Va for New Year, but Mackenzie is not feeling good so we might just head home and give her a few days to recover before starting school.
I have thought about shutting down this website. I am not sure what I will do. For now, we will keep it going. It is the complete journey of Ashleigh, including the memories and mourning of her. I also feel a close connection to her through this website. I do not know why. In time, I might slow down on posting or even stop...
Please know that we appreciate all of you, who supported, loved and prayed for Ashleigh and our family. You carry us more than words could explain. Your emails and messages have given us great strength, knowing you all cared for us and she touched your lives means so much to us. If you can remember, I would love to hear how you found Ashleigh's website or some type of impact Ashleigh had on your life or your favorite Ashleigh story. Please feel free to share here or email me. Thank you...
God Bless and Happy New Year.
Sunday, December 23, 2007 10:22 PM CST
Days seem to go on forever, we desperatly try to stay happy for Mackenzie. All three of us break down and cry several times a day. I never thought a person could hurt as much as we do. We have wonderful friends, who call several times a week and keep us busy. We had dinner at the Byrd's last night and the Wright's tonight. They have been so wonderful to us. We talked freely about Ashleigh. Thank you for your kindness, support and prayers.
We are anxious to meet with Dr. Kurtzberg for the autopsy results. We need to have it confirmed that we did everything we could. Even though we know it was in God's hands, Ashleigh was tired and God wanted her home with Him.
Knowing that does not take the pain from our hearts. We rejoice for her, knowing she is healed but we are broken and sad that we could not heal her here on earth. We so want to hold her, smell her, snuggle with her, and kiss her.
I received an email from a great friend, she too is in the "club" with no name...
"I just wanted to tell you that for me the pain did lessen with time. I still have my bad days. And even my low moments. But for me, 2 years after losing Maddie I found that the knife in my chest seemed to disappear. And more of my happier times weren't just me pretending to be happy."
This email met the world to me, as I feel people think we should just move on. Thank you, Jane for letting me know that we are normal in our pain.
Our dear friend, Edie posted this and I wanted to bring it to the front page, for those who don't go in the guestbook.
"Christmas In Heaven"
I see the countless Christmas trees around the world below
With tiny lights like heaven's stars reflecting on the snow.
The sight is so spectacular please wipe away that tear
For I am spending Christmas with Jesus Christ this year.
I hear the many Christmas songs that people hold so dear
But the sounds of music can't compare with the Christmas choir up here.
I have no words to tell you of the joy their voices bring
For it is beyond description to hear the angels sing.
I know how much you miss me, I see the pain inside your heart
For I am spending Christmas with Jesus Christ this year.
I can't tell you of the splendor or the peace here in this place
Can you just imagine Christmas with our Savior face to face?
I'll ask Him to lift your spirit as I tell Him of your love
So, then pray for one another as you lift your eyes above.
Please let your hearts be joyful and let your spirit sing
For I am spending Christmas in heaven and I'm walking with the King.
~ by Wanda Bencke
© Copyright 1999
Have a wonderful Christmas!
Thursday, December 20, 2007 9:01 AM CST
Three weeks ago today, we woke up, prepared for a day at clinic...took Mackenzie to school, arranged a playdate for her, headed to clinic. Never did it cross our minds that we would leave empty handed. Never did we thought we would push Ashleigh's wheelchair out empty. Never did we amagine the pain that we would feel.
How we would give anything to hold her, smell her, lay face to face (her favorite way to sleep)...to hold her sweet puffy hand (another one of her favorite things), to have sloppy kisses, to hear her giggle, to have a eye roll...
We have wonderful friends, who try to keep us busy. Mackenzie has a "best" friend, here from New Jersey now, we took them to see the Polar Express at the IMAX theater last night. They exchanged presents, made gingerbread cookies, played and had a great time.
Saturday and Sunday nights we are going to friends for dinner. We doing our best keeping at keeping busy, but our minds always wonder to Ashleigh.
We are also fighting colds, of course, we think of how we would need to keep Ashleigh safe from them...
I will update soon...
Monday, December 17, 2007 5:55 AM CST
Howard said that at night after dinner, he feels loss. That was a busy time with Ashleigh...3-4 breathing treatments, 2 IV antibiotics, two rounds of oral medications (5-8 in each), feed, PJ's, book, bed, music.
It was a busy time. Now after dinner, we look at each other and we know the emptiness the night is going to bring. We play board games with Mackenzie or snuggle and watch a Christmas movie, but there is a a huge hole.
I kept dreaming of Ashleigh last night. I woke several times, thinking her monitors were going off.
Mackenzie and I went to a Christmas tea party yesterday, it was nice, Mackenzie had a great time with her friend Heather.
We started going through some of Ashleigh's medical supplies but stopped, everything is all pulled out, we just didn't have the engery to finish. Maybe today...
Mackenzie reminds me that Ashleigh is healed, yet in the morning, she sits on the couch and reads something about Ashleigh and cries. Yesterday, she was reading the Ashleigh funeral service with tears running down her face. Then she turned to me and told me how happy Ashleigh must be to be able to run and play, she said she was sad because she misses her but happy for Ashleigh.
Friday, December 14, 2007 6:38 PM CST
Another week has gone by without Ashleigh...
Tuesday, Howard and I picked up Ashleigh's ashes from the funeral home. It made it seem so real. She really is gone. I would give anything to play with her curls and smell her soft her skin.
After school, the three of us took the ashes and had Ashleigh placed in the build a bear that she slept with every night. It smells like her.
I am not sure how to explain our lives now. Mackenzie returned to school and she is certainly keeping us going. Without her, I think I would just stay in bed forever. Howard returned to work on Wednesday. A wonderful friend kidnapped me for a few hours on Wednesday. Thank you, Keith for keeping me busy. Thursday, I drove around, walked around stores and kept busy until it was time to pick Mackenzie up from school. I met Kelly for lunch. Thank you, Kelly. The thought of coming in this house without anyone here makes my stomach turn. I also went out with Jenn, Ashleigh's awesome therapist. Jenn taught Ashleigh to communicate. She really believed in Ashleigh. Thank you, Jenn and Sophia.
I was emailing last night with Dr. K last night. She has a family who lives here in Chapel Hill that could benefit from Ashleigh's high chair. We are going to meet with the family and show them some of the toys and equipment that Ashleigh had. It will be hard to let go of her chair, but we really want to help other children. I am meeting with Dr. K in the beginning of January to talk about things, including Ashleigh's autopsy results.
I received a card in the mail from Dr. Escolar's office. It was beautiful. Someone wrote that parents who have children in heaven do not have a title. We are not widows, widowers or orphans. There is no title for us, she said it was because it was unspeakable. She would know, she is in our "club".
The front of the card read:
Perhaps they are not the stars, but rather openings in Heaven where the love of our lost ones pours through and shines down upon us to let us know they are happy.
I will try to tell you about Ashleigh's services soon.
Saturday, December 8, 2007 8:01 PM CST
I have come here several time, I just don't know what to right. I am lost for words. I don't know if I should start by telling you about Ashleigh's last night on earth, about all the people who have contacted us, about how much your letters, cards, phone calls, emails and postings have met to us. Should I tell you about the incredible service that we had for Ashleigh? About our broken hearts? Our plans for Ashleigh equipment? My job offer? Honestly, I don't know what has happened over the past week, I know that it has been 7 days, 23 hours since Ashleigh has left us. I know that we would do anything to have her back with us. To smell her stinky breath, paint her nails, do her hair, dress her in pretty sweaters, read her books, listen to her monitors, her music, snuggle with her. I would take the sleepless nights, blood draws, IV's, suction, oxygen...I know it is selfish of me, but I just want my baby back.
I am not sure what happened that night, I can tell you that Ashleigh looked amazing, we gave her a bath, took foot and hand prints, did her hair. Mackenzie hugged her and rubbed her face. Ashleigh died in the PICU at Duke, while they were trying everything possible to keep her with us. She had an infection in her blood. As of know that is the cause of death. Other test are still pending. We spent three hours with Ashleigh after she passed. We thank Kelly and Terry for everything that night...getting Mackenzie to us, driving us home and taking care of all of us. Sue, for being with us, helping us bathe Ashleigh and handling all of the legal stuff. Dr. Kurtzberg for you continued support of our family. The PICU team for their kindness and trying to help Ashleigh. The bacteria took over so fast that there was not anything anyone could do.
I want to update about her service in a couple of days. I want to gather all the information to tell you. It was perfect and I thank Kelly for all her help. We would not have done anything, just pretend it didn't happen. Thank you Kelly for helping us give Ashleigh a celebration fit for the princess!
We are going to be donating Ashleigh's medical supplies to several families with leukodystrophies. Her large medical equipment like her bike, high chair, stander, versa form and various ball and other therapy toys will be donated to Duke. With the guidance of Dr. Kurtzberg and Dora (PT), we will be starting the Ashleigh Ryann Gwin equipment exchange program. Ashleigh loved her therapies and we feel this is a great honor to her. Howard and I will continue to buy gifts for Ashleigh for birthdays and holidays, giving the presents to the exchange program as a way to keep Ashleigh's memory alive.
We will also be posting information about the Rainbow of Heroes walk soon. We want to honor Ashleigh as our HERO. We are inviting you all to join us at Duke to walk and raise money in honor and memory of Ashleigh. Our goal is to raise $10,000 and we want to have a team of Ashleigh shirts walking!! There will also be a party at our home following the walk!
I will be having "a meal" with Dr. Kurtzberg within the next week or two to talk about the program, Ashleigh and a job offer by Dr. K. I am not sure what I will be doing, but whatever it is, I hope to tell about a little girl who fought so hard and made her family so happy.
I am sorry, I will write again soon. I will tell you about her services and how incredible she looked, the perfect little angel.
Friday, November 30, 2007 6:41 PM CST
Services will be on Monday, December 3rd.
Hall-Wynne Funeral Home, 1113 West Main Street, Durham, NC 27701 Visitation/Viewing 3:30 - 5:30 PM, Service at 5;30 PM in the Hall-Wynne Chapel.
In lieu of flowers donations can be made in memory of Ashleigh Ryann Gwin to:
Pediatric Blood and Bone Marrow Transplant Program Research Fund, Box 3350 DUMC, Durham, NC 27710
or
The Hunter's Hope Foundation Family Support Program, PO Box 643, Orchard Park, NY 14127
Friday, November 30, 2007 0:43 AM CST
At 10:00 pm, Thursday, November 29, 2007, Ashleigh Ryann Gwin earned her wings and entered God's arms. She is healed and free to run and play.
We thank you all for your continued support and prayers for our family over the pass 5 years.
Wednesday, November 28, 2007 7:22 PM CST
Ashleigh had her new tube placed yesterday. They had a hard time getting it in place. We fed Ashleigh 165 ml of formula last night with a pump. She also had 500 ml of fluids.
Everything seemed to go well. Until late morning, Ashleigh's stomach is huge, tight...so tight that her belly button is gone! She is also having diarrhea, 12 diapers in 4 hours. We stopped feeding her and she is getting IV fluid tonight. Tomorrow, we will be back in clinic. We will be checking her blood, tube placement and doing an ultrasound.
Ashleigh blood and urine cultures have not grown anything, but her airway is a breeding ground! So far, she has 4 plus gram negative rods, two different organisms and 1 plus gram positive. None of the organisms have been identified yet. Hopefully, this will be the answer to Ashleigh's problems.
Dr. K thinks that Ashleigh "does not have reserve", so any "insult" to her body knocks her out. Her body can't handle all of it, so it shuts down, so she can fight the "insult". I hope she is right. Ashleigh is very sick right now and we need to find the cause. Please pray that these bacterias are causing the issues.
We are watching the Grinch...all four of us are going to snuggle and enjoy some family time!! Good-night!
Monday, November 26, 2007 8:24 PM CST
We had our meeting with Dr. Kurtzberg and Sue this morning. Howard said he hates meeting over in her office, it takes him back to when we first found out Ashleigh was sick and we were trying to decide what to do for her.
It was a quick talk, she wanted to see Ashleigh, examine her so we can find a way to help her. Dr. K is not concerned with the liver or the increased neutrophils. She said that the liver has the starry sky appereance because of the use of steroids and because we are not able to feed her. She said once we get some nutrients in her and can cut back on the steroids her liver will return to normal. Neither will cause long term damage.
Dr. K thinks the neutrophils are up because of the stress Ashleigh's body is under right now. She said that Ashleigh is so sensitive that the slightest thing wrong, throws her body into a spiral.
Ashleigh was pumping her tongue the entire time we were there and she would not wake up, actually she only opened her eyes for 30 seconds (really, we timed it) all day. Dr. K thought it could be seizure related.
She wanted us to start a B12 infusion, because that could cause the increased sleeping. We headed to clinic to do the infusion and test the TPN.
When we got there, we took a ounce of blood, ran her antibiotic, the B12, then started the TPN.
Two hours into the infusion, Ashleigh started having some breathing problems, we tried to suction her but her airway was closing. I stopped the infusion and Sue came in and ordered steroids to open the airway. We had breathing and seizure problems the rest of the night. Dr. Kurtzberg came over to clinic and we talked about a few things. She did not feel it was safe to give Ashleigh TPN. We are going to have a G-J tube placed tomorrow afternoon. Tonight we will give her IV fluids. Dr. Kurtzberg also did not feel that with Ashleigh's breathing problems that it was safe to give her anymore anti-seizure medications, without a risk that Ashleigh could stop breathing. Tomorrow morning we will have an EEG, then head to clinic. It will be another long day.
Dr. Kurtzberg asked if we wanted to go in-patient, but we decided to come home.
Dr. K wants to get another ultra-sound to see the pancreas. Ashleigh's amylase and lipase have gone up again. Dr. K thinks Ashleigh may have a cyst in her pancreas.
Please pray that Ashleigh is not having constant seizures.
I am sorry, I know there is more to fill you in on, but we are drained. I will update you after our appointment
tomorrow.
Monday, November 26, 2007 7:42 AM CST
Dr. Kurtzberg called last night, we are meeting with her in her office in about a hour to go over some things. We are then going to clinic to start Ashleigh on TPN. Please pray that she does not have a reaction and that the TPN does not harm her liver.
Also, please keep Alexia and her family in your prayers. The princess warrior is still holding on, her dad will be here soon to be with them They are an amazing family, please pray they find peace and comfort.
Sunday, November 25, 2007 10:45 AM CST
Sunday - 2:35 PM
Ashleigh's neutrophils went up again, they are at 93 her white count also went up to 21.8. She is already on a very strong antibiotic. We are still waiting for the hepatitis results. We are cancelling our appointments for tomorrow, we will be at the transplant clinic. She is going to recieve two bags of IV fluid over the next 24 hours.
Alexia is in very serious condition in PICU, please pray for her and her family. I am going to try to go visit them, hopefully I can be of some help during this difficult time. www.caringbridge.org/southamerica/alexia
***************************************
Ashleigh is a little warmer. I talked to Dr. K last night. She had us stop feeds completely and we are now doing IV fluids. Ashleigh has been warmer, not back to normal but better. Her color is better. She is pinking up some. We just took blood to clinic. We need to check her chemistries, hemoglobin and white count. Hopefully, we won't have to go to clinic for a tranfusion. Her last transfusion was Christmas day last year. We do not have the answer to the liver and Dr. K was on her cell last night so she could not access the system to check for any results. She thinks the problems with the liver are caused by prolong use of high dose steroids. The bad thing is that we can not take Ashleigh off steroids because of her breathing problems, stress to her body and she has adrenal failure.
Your prayers are working, she looks so much better than she has in the last few days. We are not out of the woods yet, but we see some light glimmering through the branches.
Our friend, Alexia is in desperate need of your prayers. She is in PICU right now and her parents are waiting for some answers. Please pray for sweet Alexia, she is a precious little girl who has fought an amazing battle with the beast, leukemia. We love you, Alexia!www.caringbridge.org/southamerica/alexia
Saturday, November 24, 2007 1:04 PM CST
Still no answers on the many questions we have about Ashleigh's liver. She is having alot of problems with her body temperature, it has been as low as 94.2. We are using heating packs to warm her. She still can not tolerate formula, we are using the pedialyte with IV fluids as back up. She has been on O2 around the clock, she is not waking up much. She is still on IV antibiotics for her staph aureus infections.
We are trying to get in the holiday spirit, but both Howard and I are nervous. Mackenzie's dream is haunting us. We just need answers for Ashleigh. We each took some time to hold her yesterday, we cried and prayed.
We were hoping to take a trip to the mountains for our Christmas tree...hot chocolate and some holiday music, but with Ashleigh having such a hard time, Mackenzie and Howard may be going without us. It has been our tradition that Howard and Mackenzie get the tree, when they return we have some snacks and decorate, while listening to Christmas music.
We are still settling into the house. We should be able to park in the garage by next weekend! We will start decorating next weekend for Christmas.
Ashleigh has orthopedic and pulmonology appointments on monday, we see Dr. K on Tuesday. I will update when we have answers...
Tuesday, November 20, 2007 7:37 PM CST
Please pray for Ashleigh...
Last week, Ashleigh had problems with infections in her airway. We decided today that she was not getting better so we started IV antibiotics. She has green secretions coming out of her. Sue thinks they are packed in her sinuses. Ashleigh has had two bloody noses this week.
A chest x-ray today, also shows that she has "air space opacity in the left lower lung" which could be either atelectasis or infection.
Her x-ray of her abdomen did show that there was no sign of gall stones but she has nonobstructed bowel gas, no free air.
It also picked up bilateral hip valgus with the right greater than left uncovering the femoral heads and osteopenia.
Since Ashleigh has not been able to eat in a week, we are going to start IV fluids until Monday, if she still has issues we will start TPN on Tuesday. She is still not digesting formula, she has had blood come from her stomach and in her stools. Sue sent Ashleigh for an ultrasound. Well the results felt like getting a kicked in the head...
Kidneys are normal, sleen is normal, normal gall bladder, could not see the pancrease because of the gas in her stomach. Mild dilation of the intrahepatic biliary ducts and proximal common bile duct, but no obstructions were noted. Great, Huh? No, not really...
While we were in getting the test, the radiologist came in to get a few extra pictures of the liver. She told us that it looked like Ashleigh has hepatitis. We went back to Sue, who called down and questioned this because Ashleigh's blood is checked weekly for signs of organ difficulties and Ashleigh's liver test have been normal. The doctor told Sue that Ashleigh's liver looks like an alcoholics, and had a "Starry sky appearance, which is most commonly seen in the setting of acute hepatitis, however has also been reported with leukemia, Burkitt's lymphoma and toxic shock syndrome." Sue talked to Dr. K and they do not feel that Ashleigh has symptoms of these. They checked her blood for ammonia, thank God that came back okay. We have hepatitis test pending.
Ashleigh has required 3 liters of O2 most of the day.
I will update when I know more...please just pray for this to pass.
Sunday, November 18, 2007 9:32 AM CST
Happy Birthday, my sweet Mackenzie!! I can't believe Mackenzie is 8 years old today. We had a party at a horse farm yesterday with all of her friends. They brushed and groomed the horses, each rode the horses, bobbed for apples, made a craft using real horse shoes, rode on the gator, and had a horse pinata. We had hot dogs, chips and juice. They sung happy birhtday and had cinnamon cupcakes.
Today we are just playing and being together. We are still trying to settle into the new house, we have a lot of unpacking to do, we will work on when Howard and I have time to go through things together.
Ashleigh is still having some trouble, we had to stop feeding her formula, she is on pedialyte only. We are talking about switching her to IV fluids for a few days to give her belly a chance to heal. TPN is not an option we are looking at because of her allergic reaction last year. We are still waiting for more information on the infections in her airway.
I will update more when we know something...
Wednesday, November 14, 2007 9:28 PM CST
The Birthday Update...
A great friend told me that there was going to be certain birthdays that are harder to handle than others...1, 5, 10...
Ashleigh will be turning five in just a few hours. We had to go to the hospital at 5:45 am on November 15, 2002. We were handed a beatiful baby girl a few hours later. Little did we know what the next five years would bring our baby, what she would overcome, how many lives she would change and the friends that we would make and lose on this journey.
Someone asked me if I ever regret the choices we have made for Ashleigh, the answer is no. We would do it all again if she needed us to. She is amazing, she has made so many gains this year and we know that she will make many more. Dr. Kurtzberg has been talking about Ashleigh's head control for two days. She has also been talking about how aware Ashleigh is, how much she interacts with us, and how much she is trying to talk to us.
So, with so much progression, why is this birthday so old. Ash is not a baby anymore, she is a big girl. She should be in pre-school, getting ready to start big girl school. She should be in dance or gymnastics. She should be playing barbies and baby dolls. This birthday makes thing very real to us. Thank you to my dear friend, who understands how this hard year is.
Okay, maybe moving has been emotional too. Trust me it is wonderful. I love our home. The apartments were a safe place. Transplant families were everywhere. I needed a supply, I knew who to call or which door to knock on. The apartments were a safe place. The house is a home, a new life for us to build.
Okay, Mackenzie had a dream a few months ago. One she is still talking about. In the dream, Ashleigh died. Mackenzie first thought it was one of their birthdays. Then she said she thinks it was Christmas because there was a lot of presents. When I told Howard he said that he gets nervous around Ashleigh's birthday, because alot of times, people die near their birthday. I am just nervous.
I aswered the questions about how I am, but I decided not to respond on Ashleigh's birthday celebrate. We will celebrate this day as if it were our last...
Ashleigh has alot going on medically, I will update when we know more details....
Wednesday, November 14, 2007 7:13 AM CST
There is so much going on, sorry for the lack of updates.
Ashleigh has been wonderful! She is awake, smiling, laughing and has been holding her head up on her own alot more! Dr. Kurtzberg was very impressed with Ashleigh's head control yesterday at clinic. We are going to hold off on the functional MRI, Dr. K wants to find out more information and find someone who knows what they are doing.
Of course, there are issues that we are watching and are a bit concerning. The first is that Ashleigh did not digest her food. When we hook up her tube to feed her, she brought out 40ml of undigested formula. We are going to watch it for now and see if she continues doing it. Dr. K is hoping that is going to pass. We are also going to test her pancrease today...it is just a blood test.
Another issue is that Ashleigh had spit out some dark yellow/brown/reddish mucus yesterday while we were at clinic. We tested it to see if it was formula, worried that her nissen was loose, but it tested negative. She spit up some more and we sent it for cultures. So far it has tested positive for three different types of bacteria. They have not identified which ones yet. Please pray that it is not MRSA.
One a good note, we have been keep her busy with all her therapies and we can see so much improvement in some of her skills. We are trying to get an appointment with Dr. Escolar.
The house is coming along, we are unpacking. It is exciting but we are tired from all the stuff to do.
Monday, November 5, 2007 7:02 PM CST
Please celebrate with us...
We move into our new home on Saturday. We are so excited!
Ashleigh is doing great. She had a great therapy session with Dora, enjoyed a bike ride and was wide eyed all day!
We have clinic next Tuesday, where we will celebrate Ashleigh's 5th Birthday. On Thursday she will be 5!! It amazes me that my baby is 5, that she has been through so much, that she is still with us!
Mackenzie is going so good. She has so many friends and has really grown alot this year. She picked out her bedroom colors...PINK. She will be 8 on the 18th! Again, I am amazed. She will again, have her party at a horse farm.
Today, around 4:50 the governor of Illinois has signed a bill for NEWBORN SCREENING! The second state to start screening for Krabbe! We are celebrating, tears of joy. We are so grateful to the families who have lobbied for this bill. Congrats on your victory!!
Four leukodystrophy families have lost their children this weekend. Please pray for them. Our friend Alexia is still having alot of problems, yet, like the princess she is, she still smiles. Sending many prayers and hugs to her and her wonderful family.
Monday, October 29, 2007 4:35 PM CDT
Ashleigh is great. She had a little low body temp today, but she brought it up with some blankets. Mackenzie is great. She has been very busy with her school, extra activities and social life. She really seems happy.
We signed on our house today! We are going to painting and moving over the next couple of weeks. If you want our new address, email me. Our phone numbers and email will stay the same.
Our friends are still in need of prayers...please keep sending them!!
God Bless.
Saturday, October 27, 2007 7:18 AM CDT
Ashleigh is doing well. Her airway responded well to the anitibiotic breathing treatment. Her urine culture was negative. She has been awake and seizure free! She didn't get in too many bike rides this week with Jamie because of the rain. We needed the rain, so we are not complaining!
That is all on the medical front for Ashleigh...she is doing great!
Mackenzie went to a sleepover last night. I am going to go get her soon and we are going to go spend the day together.
We are going to closing on our house on Monday. We are going to start painting on Tuesday! Ashleigh's therapy room and bedroom will be the first painted so they have plenty of time to air out.
Two of our friends need alot of prayers. Alexia has been battling leukemia for a long time and the "cancer beast" is causing her to have a lot of pain. Please pray that she will be comfortable and be able to enjoy more time with her beautiful family. www.caringbridge.org/southamerica/alexia
Sofia is preparing for her second bone marrow transplant, she needs to reach remission first. Please pray for her to have good cells, so they can get into transplant.
www.caringbridge.org/visit/sofiacastro
Both of these families are so wonderful. They have dedicated everything they have and are to helping their little girls. They have been wonderful friends to us and they need us now to support and pray for them. Please join us...
God Bless.
Wednesday, October 24, 2007 6:14 AM CDT
Saturday, Dr. K added some breathing treatment to Ashleigh's care, including an antibiotic. We also increased her steroids for a couple of days. Ashleigh is doing much better. She has not had any fevers but she is still coughing up some thick mucus. Dr. K thinks it will clear up in a few more days.
We did some cultures on her urine yesterday. We will know the results in a couple of days. We decided not to do viral cultures on her airway since she is getting better.
Dr. K is going to make some calls for Ashleigh to have a functional MRI. We are going to enter Ashleigh in a study that was in The New Yorker on October 15th, proving that Ashleigh's mental function is normal. Dr. K thinks this will be important for Krabbe research and we are excited for both Ashleigh and all the children that suffer this disease. Functional MRI's are not done alot so Dr. K said we need to find a specialist in this field, she of course, knows who to contact.
Mackenzie is going to have her blood drawn at the bone marrow clinic for her MMR. Dr. K said she will take care of the results and the state.
We talked to a reporter yesterday from the Wall Street Journal, Dr. K asked us to share our story about Ashleigh, Krabbe and Transplant. I will let you know when the story runs.
Mackenzie is doing well in school. She has a busy social calendar. I am planning both girls birthday parties. We are going to move in a couple of weeks. We did our final walk through and we are most likely making settlement next week. We are going to paint and let the house air out before moving Ashleigh. Paint fumes can trigger seizures.
Mackenzie's cat, Charlotte was diagnosed with FIV, the cat version of HIV. She is not contagious to humans and there is nothing to do except watch for signs of illness. We will then treat her very agressively. The vet said she has a cat that has had it for 8 years. Mackenzie will be heartbroken if something happens to her baby. Howard had a biopsy on his side, we are waiting for the results. Okay, I think that sums up our family for the week. Thank you for checking in on us and thank you for the prayers, support and love you send us.
Sunday, October 21, 2007 7:37 AM CDT
Where do I begin. Last week I felt like we were in the calm before the storm. Things were going so well and I felt like something was going to hit us...
Well, here it is...Ashleigh has had a fever for days. She is having some brething issues, coughing up junk. Dr. Kurtzberg had us increase her albuterol to four times a day and we also started her back on Tobi breathing treatments. We usually do them twice a day, Dr. K started her on four times a day this year. We need to be agressive with some of the things that are in the community right now. Hopefully, we can identify this infection fast and treat it correctly.
We are also concerned with the "antibiotic-resistant staph"
It is MRSA, methacillin resistant staph aureous. Ashleigh already carries MRSA in her urine. If Ashleigh were to get it in her blood or airway, we have been told by many doctors that Ashleigh most likely would not be able to beat it. Please pray that MRSA does not attack Ashleigh's body. North Carolina has had two cases so far. Of course, I am tracking it on the Center for Disease website.
The state of North Carolina is trying to make us get Mackenzie her last MMR, which is a live vaccine. Since Ashleigh is still on immune suppressant medications, it would not be safe for Ashleigh to be in direct contact with a person who has a live vaccine. Dr. Kurtzberg said she will call the state. She has already sent them a letter but now she has to call and talk to the state medical director.
We are doing our final walk through this week for the house. We are excited about having a HOME and overwhelmed by the packing and moving!
Wednesday, October 17, 2007 9:52 AM CDT
Ashleigh went to clinic yesterday. I am not sure what it was about the the visit, but I left there with alot of HOPE for Ashleigh and her future.
Dr.Kurtzberg thinks we need to get Ashleigh a hospital bed, however, she wants us to have one with solid sides. Not the kind you see in hospitals. If Ashleigh were to seiz at night, she could be injured in the bars of a regular hospital bed.
She also mentioned a few other pieces of equipment that may be helpful to Ashleigh in the future. Dr. Kurtzberg requested a catalog of handicap equipment.
Dr. K also gave me a newspaper article that she thought was important for Ashleigh. It has amazing research proving things that we have known for Ashleigh. We are not trying to contact this researcher. I will expand more on this when we have more information.
We also talked about another treatment that will soon be available for Ashleigh. Giving Ashleigh more skills and a better quility of life.
It was a great visit, I left feeling happy for Ashleigh. As I thought more about this visit, I thought of many more questions. I can't wait until next weeks clinic visit. Ashleigh is scheduled for IVIG and she will start her infusion to prevent RSV.
Thank you for all the prayers during our tough days, I ask you to celebrate these good days with us!!
Friday, October 12, 2007 7:10 AM CDT
Ashleigh is still doing great. She had a bit of low body temperature yesterday. The first cool day and her body reacted to it. Everything else is going well. Her low body temp did concern me, I think it might be a hard winter on her little body.
I had a friend over for lunch yesterday, Ashleigh and her baby, Sophia stared at each other. It was funny. Ashleigh didn't cry when I held Sophia but Ashleigh was also busy with her therapies. We all went for a bike ride with Ashleigh. She loves her bike and the weather is cool enough.
Mackenzie is off from school for four days. We are going to the state fair and horseback riding with her friends. She is excited. She has such wonderful friends.
Monday, October 8, 2007 9:45 AM CDT
Ashleigh had a wonderful time being spoiled by Kelly and Julia. Thank you both for taking such good care of my girl.
Ashleigh had a wonderful weekend. A few times she had a bit of a fever, but otherwise she did great. She was spoiled rotten by Julia (her nurse) and Kelly (Angel David's mom). We are off from clinic this week because both Sue and Dr. K are out of town. Her versa form pillow came in, we are going to try it out today. No secretion problems, seizure are being controlled again and we are back on track!!
She was smiling and happy when we came home last nigh.
Mackenzie had a fantastic time being a flower girl. She did such a great job, kept her head up, dropped her rose petals, reminded the maid of honor to give the flowers back to the bride and straightened the brides dress. At the reception she played with her new "cousin in law" and danced the night away. Please pray for me when this girl is 21, she was a party girl! We also went to Keeneland Race Track. Mackenzie loved the horses, we had a great time giving Mackenzie some special time. Of course, she still wanted to be with her mom-mom, so two of the nights she slept with her, giving Howard and I a chance to go out on the town. Howard's sister took us to downtown Lexington Thrusday night. We had a great time. We really enjoyed the weekend.
It was hard leaving Ashleigh but we know it was best for her not to travel during this time of year. She has really had a hard time after trips so we are going to have to be very careful. I cried on the plane, I hated leaving her. After we got there and we were so busy, I knew it was best for her. It was also important for us to be able to give Mackenzie our attention and love.
I happy to be able to give you all a happy update! God Bless.
Monday, October 1, 2007 9:17 PM CDT
Ashleigh has been better the last three days. It seems the Keppra was not giving her the seizure coverage she needed so she is back on Zonegran. She has not had any issues, she is a bit sleepy but we expected her to be because of the seizure medications being changed around and the amount of IV medications she needed last week.
Thank you for the quotes, I am very excited about Ashleigh's therapy room. I think it will be the first room done in the house! I do need to know who said them also. We will be accepting the deal for the house tomorrow and we will find out when we can go to settlement, they think around the end of October, beginning of Novemeber.
We will be going to Kentucky this weekend, we are excited to meet with a few Krabbe families. Howard's sister is getting married there. Mackenzie can't wait to drop the flowers, it is the second most important job at the wedding, behind the bride...well, Mackenzie thinks so. Mackenzie also can't wait to go see all the horses.
Heading to bed...crazy week, clinic tomorrow, class trip on Wednesday, early flights on Thrusday, busy weekend!
Sunday, September 30, 2007 8:36 AM CDT
Ashleigh had a good day yesterday. No breathing episodes or seizures. She is a bit sleepy because of all the seizure medications. Hopefully, Tuesday Dr. Kurtzberg will make some adjustments so we can wake her up a little.
She was awake at 3 am, she was laughing at me when I told now was the time to sleep and she would smile when I would hold her hand or rub her face. I finally carried her into my bed...she laughed the whole way as if she was getting away with something.
Hopefully today will be another good day and we are over the hump.
I need you help with a project. As you know, we are buying a house. We will be turning the study into a therapy room for Ashleigh. I want to paint famous quotes on the wall. I am looking for inspirational quotes. I like the words believe, faith, life, dream, strength and of course HOPE. If you know of any other words or quotes please send them my way.
Mackenzie is doing well in school. She is having some problems with her fine motor skills that are causing her to be hard on herself but her teacher said she is doing fine. She loves math, science, history and bible. She does not like spelling or gym. She is also starting chess club agian, she is very excited about that.
Going to clean before we play family games
Saturday, September 29, 2007 7:37 AM CDT
Thursday, Ashleigh woke up smiling and happy. Within a hour, she was crying during her breathing treatments. Our nurse was here along with her supervisor (who use to work on the bone marrow unit). Ashleigh started to have breathing problems, dropping her oxygen into the 60's, turning blue and requiring suctioning and oxygen. I called Sue, she had me give her a bunch of steroids. Ashleigh seemed better for a few minutes. She started having breathing problems again within minutes. Again, she stopped. She was breathing 48 times per minute. Pulling from her stomach to get oxygen in. Then out of no where, it all stopped. Her breathing then became very shallow, kind of like she was stuttering to breathe. It was a long day, but Ashleigh pulled herself out of it on her own.
Yesterday, Ashleigh has more seizure activity. I gave her Ativan at home, it did not work. We headed to clinic. Ashleigh was stable at clinic, except one time her oxygen dropped to 58. They were about to pull the emergency button, but Ashleigh again pulled herself out of it before they did anything. She has some episodes of zoning out, they could have been seizures but they could also be that she is so drugged because of us giving her increased doses of Ativan and adding other seizures drugs.
We are going to add her zonegran back up. Next week we are going to remove the Keppra. We just do not think the Keppra is working on her seizures. We will most likely have to increase either the zonegran or lamictal.
Monday we saw a pulmonogist, I will tell you about the awesome visit soon. When Ashleigh slows down a bit. I will write more soon...
Wednesday, September 26, 2007 2:49 PM CDT
If I would have wrote this update on Monday it would have been about how much better Ashleigh has been. Not back to her baseline but better than where we were. However, I waited too long to write the good update and well the good days left us yesterday.
We arrived at clinic yesterday at nine in the morning. Everyone commented on how wonderful Ashleigh looked. She was awake, looking around, her long hair was down (it is all the way down her back now). We got into a room, they hooked up her monthly infusion of IVIG and she went to sleep. She was a bit "jumpy" so I had the nurse get Sue. Sue felt that it was seizure activity so she and Dr. K thought we should give her an IV dose of Keppra, because her levels have been so low. They interupted her IVIG and gave the Keppra. Ashleigh seemed better. We finished our visit and was ready to leave. I put Ashleigh in her chair while Sue went to get test results for me. Ashleigh started to scream, retch and cough. We put her back in the bed and the nurses suctioned her and put her on oxygen. Sue and I talked more and we thought she was okay. I started to pick her up and Ashleigh started to "laugh". Sue and I were joking. As I tried to pick Ashleigh up her body stiffened. I could not bend her legs, arms, or trunk. She pushed back so hard that I could not lift her little body off the bed. She became too heavy to move. Sue ordered IV Ativan. We waited and Ashleigh did not get better. They ordered her another dose of IV Ativan. She was up to 2 mg, the dose they would give an adult. Ashleigh slowly came out of it. They then wanted up to stay for a while, because of the high dose of Ativan and they wanted to give her another dose of Keppra.
Howard left work early. Thank God they have been so understanding about Ashleigh. He picked up Mackenzie from her afterschool program and brought me dinner. They left and Ashleigh and I did not return home until after 9:30. I am not sure how we got out of there without an admission to the hospital.
Ashleigh is still on oxygen, she has barely woken up today. Between the seizure activity and the medications, we did not expect her to. She now has a fever so we had to do cultures, although it could be from the damage in her brain.
She looks so sweet when she is sleeping. I could sit and look at her face all day, hold her pudgey hand and play in her long hair.
Sorry for waiting too long...
Wednesday, September 12, 2007 8:36 AM CDT
Ashleigh started having some problems yesterday as were heading to clinic. When we got there, Ashleigh went right into a room, Sue ordered iv steroids and a chest x-ray. The pneumonia still did not clear, so Dr. K switched anti-biotics. Dr. K also thinks that Ashleigh's crying and mood swings are related to the high doses of steroids. We are going to try not to use them, unless we absolutely need to.
Dr. K was impressed with Ashleigh's interacting with us. Ashleigh kept laughing and smiling at Dr. K when she talked to her. It was wonderful to see.
Mackenzie is doing great in school. She is playing with some new friends and having a great time learning new things.
Sunday, September 9, 2007 10:57 AM CDT
The best news I have to share today is that Ashleigh has been better. She is not back to herself, but we are in a much better place than we were. She has been smiling. Showing us her little personality...I should say big, there is nothing little about her attitude! She is having her therapies and enjoying some new books on CD. Thank you, Jenn. Ashleigh is really enjoying them. Also, thank you Terry, Ashleigh loves the CD. Her eyes are wide open everytime I put it on.
Mackenzie had her first spelling test this week, she got a 103 (she got the bonus words right). She was so nervous before school, but she did great.
I think we found a house. We are going to meet with them next week and if we decide to buy it, it will be built and we could move in Jan/Feb. We also are looking at another house that we move in next month.
Okay, need to make lunch for Kenz and get medications for Ashleigh.
Monday, September 3, 2007 8:55 AM CDT
Ashleigh has had some amazing days...smiling, laughing, riding her bike, playing in therapy but then...out of no where is is labored breathing and struggling again. We have required oxygen everyday...anywhere from .5 to 6 liters.
We treasure the good days, enjoy her happiness. As soon as we start to think this is over, we beat whatever this is, she slides back into it.
She started a couple new medication to help her, including an antibiotic for pneumonia in the top left lobe. Dr. Kurtzberg thinks that she has some kind viral infection that is really beating her up. She had a seizure last Saturday, which we think made her aspirate, causing the pneumonia. Dr. Kurtzberg said there was not scaring on the lungs so it is not chronic and it is only on the top lobe so she feels it is aspiration. Any insult to Ashleigh's body, like infection, causing more seizure activity. Hopefully, this is all the cause and she will continue to fight this "infection".
I have to go, I promised Mackenzie a game of Clue.
Sunday, August 26, 2007 6:25 PM CDT
Ashleigh is about the same, very sleepy, labored breathing, but her oxygen is down to 2 liters.
I just wanted to thank you all for your messages, emails and phone calls. They have given us great strength over the last month. I read them to Ashleigh and hopefully she knows how very loved she is.
Thank you so much...
Sunday, August 26, 2007 6:27 AM CDT
I wish this was a case of no news is good news but it is not.
Ashleigh has continued to struggle. She is on 5 liters of oxygen right now. She is struggling to get air in and we can not find the cause. Howard and I have most things in place. Dr. Kurtzberg and Sue both said they would be here with us if the time comes.
Everyone has always told us that Ashleigh would let us know when it was time, both Howard and I feel like something is different. She can not continue like this. Last night, she was struggling, we talked about taking her into the hospital. We got in bed with her, held her and talked to her.
I know I am not ready for this, I don't know if I am loosing her, I don't feel the signs that I was told about, but she looks so bad that I don't want her to suffer anymore. I also don't want to loose her.
Please pray for her peace
Thursday, August 16, 2007 7:22 AM CDT
I don't even know where to start...Dr. Kurtzberg requested a sit down meeting with both Howard and I. 8:30 yesterday morning we met with Sue and Dr. K in their office. Dr. K said she does not know why Ashleigh is suddenly having these issues and we are just going to have to go by what Ashleigh is doing. We made a few changes to her medications. We talked about Hospice and we are going to set things up for Ashleigh. WE ARE NOT GIVING UP ON ASHLEIGH AND WE ARE NOT SAYING WE ARE GOING TO NEED THIS TOMORROW. Dr. Kurtzberg is helping us set up care for Ashleigh to protect Ashleigh and us. As of now, in North Carolina, if Ashleigh were to die in our home, there would be a police investigation and she would go to the county for a complete autopsy. We do not want that. Having hospice and a funeral home will prevent that from happening. Dr. Kurtzberg has not given up on Ashleigh and she is not recommending that we do.
Dr. Kurtzberg also said she was very happy to see Ashleigh interacting with more people, smiling and answering questions for her. She thought socially Ashleigh is doing much better. Dr. K also commented on how strong her legs are getting and her neck control, both come from the central brain...meaning there has to be some improvement there for Ashleigh.
Her nerve conduction was worse this time, but when we looked over the last 4 years, her test are all up and down. 2004 it was worse, 2005 better, we did not do it in 2006 and this one was worse. She said that a few things play a part in the results...Ashleigh was very cold at the time 34.2, a different doctor did the test, recent seizure activity.
Last night Ashleigh did not need as much oxygen, she actually has been slightly better for the last two nights. We did have the liquid oxygen delivered.
Next week Ashleigh will have a 48 hour EEG placed on her, hoping we can catch some of the activity. After it is removed we will change her seizure medications.
Howard and I sat down yesterday and talked about what we will want for a funeral and one day over the next week or two we will go to the funeral home and start making the arrangements. I know one thing for sure, we want it to reflex who very blessed we are to have had such a wonderful little girl and celebrate everything she has given to so many people...celebrate her life.
Sunday, August 12, 2007 6:37 PM CDT
Ashleigh is going through too many tanks of oxygen, so Apria will be delivering liquid oxygen this week. Still no know reason for the change. Still having very bad seizures.
Monday morning update...
Ashleigh is on 6 liters of O2. I spoke with Dr. K. She recommended a funeral home, "just in case". We just can't find a cause.
Monday noon update...
Please understand, we do not know what is happening. No one is saying that Ashleigh is going to die soon. She has a terminal disease, she is having alot of issues that we can not find a cause for. She is now down to 2 liters of oxygen and has not stayed awake for more than an hour today. We are watching for signs of seizures, but not all of her seizures are visible.
As for contacting a funeral home...again, because we do not know what is happening, we do not know what will happen each time she has these episodes. As of now, if Ashleigh were to die at home, the police will come and Ashleigh would be taken to the county. Dr. K is helping us arrange for us to be able to take Ashleigh to a funeral home without involving the police. It is just a safety measure for all of us.
We will talk more in detail with Dr. Kurtzberg tomorrow.
Saturday, August 11, 2007 5:22 PM CDT
Wednesday morning around 5:30-6:00, Ashleigh's monitors started to alarm. Her oxygen saturations dropped into the 70's, I could not get a response out of her, she would not wake up, her blood pressure dropped, her heart rate shot up. I thought I was going to loose her. I was home alone with both girls, so I started to pack a bag to take them both up to the night clinic "BOPP", but Ashleigh opened her eyes. Her blood pressure started going back up but her heart rate and oxygen were still not good. I called Sue.
Thursday, Howard stayed home from work, Ashleigh was very unstable the night before and we talked many times about taking her inpatient. She went for an MRI of her brain and sinus. The sinus was clear, no bacteria, nothing in there should be causing the issues she is having. Her brain is stable, no changes! I needed to hear that her brain is not getting worse. Now it will be sent to a specialist who reads leukodystrophy MRI's, he will look for any signs of repair.
Thursday night, I called Sue and asked about a high dose of steroids to open Ashleigh's airway, since she had started with the labored breathing again. Sue said she was thinking about the same thing, so we did it. A extremely high dose of oral steroids was given to Ashleigh. Her breathing slowed down and she was not as junky! She was still requiring oxygen but not working so hard. I now have IV steroids here incase she starts working hard to breath again.
Ashleigh has been requiring oxygen still at night, well anytime she is sleeping. She looks terrible but she still will give us her pretty smiles and laugh at us.
Mackenzie and Howard are at the pool. We are going to watch a movie when they get back.
The heat has lifted (at least for a few days). Mackenzie asked Howard if he brought the heat back with him. Our heat index has been as high as 114!
Howard and I took Mackenzie to the science musuem in Raleigh yesterday. She loves science. Howard was again amazed by how much she has grown. We then looked for a house. Howard and I went out on a date last night. We have been trying to do it every two or three weeks.
Oh no, they are back...need to go...
Thank you for checking in on us...more updates to come.
Tuesday, August 7, 2007 4:41 PM CDT
When we arrived at Duke, over 4 years ago, we signed an agreement to be part of their study to find a cure for Krabbe Disease. Part of that study includes doing these test once a year. I feel Howard and I made a committment to every family that has crossed paths with this disease, to Dr. Kurtzberg and to Ashleigh. However, today, I requested that we stop doing the tests. Two of the three tests that we have done so far have come back, well lets just say, not how we would like. Sue is going to talk to Dr. Kurtzberg and my main concern would be if she thinks she can gather information from these test to help other children. None of the results will affect how we care for Ashleigh, except the EEG which we will do in two weeks. If Dr. Kurtzberg feels this information is valuable to Ashleigh and other children, we will continue with them. Otherwise, we are just going to love Ashleigh and enjoy the things she is showing us and not look at the tests results. We now have viral, bacterial and fungal cultures pending for Ashleigh's airway. We need to find the cause of her airway problems, before whatever it is takes over Ashleigh. If no cause is found, we will have to say that it is brain damage caused by Krabbe. On a better note, her blood work came back, donor count is greater than 98 nd her enzyme is 4.1 (higher than her donor).
I will explain more when I have the energy.
Mackenzie had a wonderful time with her friend Anna today. Keath (Anna's mom) always compliments Mackenzie's manners. It is nice to hear. Mackenzie has not stopped talking about all the fun they had...swimming, eating, playing my little ponies, the diving board, ice cream...we have heard all about it! It is wonderful that she had such a great time, she always does when she is with Anna.
Howard is getting use to things at work. We are still looking for a house. Not my favorite thing to do! We just need certain things to care for Ashleigh, all one level would be ideal but we just can't find one that works for us.
It has been tough here lately, too many children loosing their battles. We may talk to the parents in the hall, in the parking lot of the apartments, at the pool, or share equipment and read each others sites. Each time one dies, or gets a bad test result, it hurts. It hits the whole community...I don't know how to explain it...just too many children fighting.
Saturday, August 4, 2007 6:39 AM CDT
Asheligh did not have her nerve conduction test as planned. Ashleigh kind of made plans of her own. She woke up with a fever of 38.4. We waited for a hour and took it again. Still up there. I had to take blood to clinic anyway for a caffeine level, so I accessed her port, and took the blood, plus a little extra for them to check her white count.
Gil (NP, Sue was off), called and said her white count came back as 18, up from 13 on Tuesday and 9 the following week. So...off to clinic we went. Dr.Prasad was the doctor in and he is always very nice to us. At first he wanted to do a chest x-ray, but I didn't think she needed one and he agreed with my reasons. The took urine, blood and secretions from her for culturing and started her on a anti-biotic. Dr. Prasad also saw the white stuff that comes out with Ashleigh's urine, so he swabbed it and sent it for a fungal culture.
We were in an out of clinic in less than 2 hours. At home, Ashleigh was crying and not comfortable so I gave her some motrin (we usually do not use it because she is on celebrex) but with her fever so high, we needed to get it down because of the risk of seizures. Ashleigh relaxed a little and slept for a while.
Mackenzie and I are going to start school shopping this weekend. North Carolina has a tax free weekend and since they tax everything...we thought we would go do the shopping now. New Jersey does not tax clothes, that was something different to get use to being down here. She wants "a ton of clothes with horses on them" so we are going to go looking for horses, horses, horses.
I am also training a new nurse for four hours this morning.
I don't leave when there is someone new here for Ashleigh, so Mackenzie and I will go this afternoon.
Mackenzie, Howard and I were playing around last night, Mackenzie went to run and spacked her head on the wall. Her right ear is puffy and bruise pretty bad, she also has a lump behind her ear. We watched her for a bit, but she is fine.
Next week, Ashleigh has a bone scan, nerve conduction and MRI of her brain and hips. I will update after we get her culture results.
Have a wonderful weekend!
Thursday, August 2, 2007 9:38 PM CDT
Ashleigh's echo came back normal. She is scheduled for a nerve conduction tomorrow. I also have to drop blood off for a caffeine level.
Ashleigh has had a couple of great days. Smiling, happy, laughing at Mackenzie. She went for a bike ride, played great in her therapies, enjoyed music class. Her nights are different. She is dropping her oxygen into the low 80's, requiring between a 1/2 and 1 liter of O2 to keep her saturations around 91. Dr. K thinks it is the apnea. Hopefully, she is right. Increasing the caffeine should help her in a few days.
Mackenzie and Howard went to a great place called Frankies. We all went two weeks ago, but the two went on Tuesday. They golf, drove go-carts, bumper boats and placed some air hockey.
We play parchesi everynight...thanks to the Kristoff's getting us absolutely hooked! We also have been reading books alot. Ashleigh now won't go to sleep without her good-night book. She is so amazing...
Tuesday, July 31, 2007 3:42 PM CDT
Quick update...
We made a ton of changes to Ashleigh's care. We changed her schedule for her studies, cancelled some test, added a few others.
Ashleigh had her blood taken today for her enzyme level, donor cells, chemistries, blood counts, lamictal level, caffeine level and hormones. We will do her immune studies next week. She then had her IVIG and we saw Dr. K.
We increased her lamictal and caffeine. We are not going to do a sleep study. She said she does not want Ashleigh on bi-pap at home, so the only treatment for the apnea would be, caffeine, which we already do.
She wants Ashleigh to get another round of botox, this time in her arms and legs.
We started Ashleigh on a antibiotic that she will take for a few months to try to control the UTI's. We also decided not to wean orapred for a while, Ashleigh needs it too much for her breathing. We will start weaning methadone in two weeks.
We are not going to see the eye doctor or do the vision/brain studies and sleep study.
We added the bone density test, 48 hour EEG, hearing/brain study and we are still talking about a few others.
We had a good visit with Dr. K today, she was asking Ashleigh to look at her and Ashleigh would roll her eyes and laugh. Dr. K said she was acting like a teenager and had too long to go before she was suppose to act that way. I like the sound of that...Ashleigh a teenager! The power of positive thinking.
So after the visit with Dr. K, I was on a absolute high...until we went down to have her lung capacity checked and echo. The echo, we do not have the results back yet. However the lung test only came back as 50 percent usage. She scored a 403 out of 800. Not good. I went up to check with Sue or Dr. K, almost in tears, scared. The lungs can't fail her!!
Sue said that she was not concerned because we know Ashleigh has a bit of a cold, so we can redo the test when we clear up her breathing in a couple of weeks. She did not think it was Krabbe at all. If it keeps coming back low, than we will start looking into more of a cause (disease prgression). However, Ashleigh is scheduled for a MRI next Thursday and her enzyme levels have been sent.
I just wanted better news....Ashleigh usually does well on that test.
Okay need to go...diaper duty, medications, dinner, family game night!
Monday, July 30, 2007 7:23 AM CDT
Okay, Okay...the long awaited update!
I am not even sure where I have left off and where to begin.
Ashleigh, Mackenzie and I went to New Jersey to meet Howard. As you can see from the pictures, it was wonderful. Howard had to stay at the base for a week after returning, so we visited with family and friends. I have to thank Howards' mom, Sharon, for all the traveling she did to help us get up to New Jersey. Ashleigh had a couple of small issues but she did well on this trip.
After Howard was released, we went back to North Carolina for a week. Ashleigh had clinic. We spent some time by the pool. Howard relaxed, as much as he could. He is a little busy. He said he had to be for the last 21 months, so relaxing is not coming easy for him.
On July 3rd, Ashleigh and I went to clinic. Howard and Mackenzie packed the truck. After clinic, we all headed to Williamsburg, Virginia. Mackenzie wanted to see where Felicity Merriman (American Girl doll) was born. I thought there wouldn't be a better place to celebrate Americans' birthday, then in American's birthplace! We had a great time. The first day, Ashleigh had some breathing problems, but by that nights she was wide eyed and laughing at the fireworks!
On the 6th, we headed to New Jersey to go to the beach with Howard's mom. We had a nice time, eating great seafood, going to the beach, going on rides and relaxing. Ashleigh was up and down with her breathing, but she did well for the most part. Mackenzie had her friend, Kelsey, spend a few nights with us, they had a great time.
On the 10th, we headed to Colchester, CT, to visit another Krabbe transplant family, the Kristoffs'. Mackenzie and Katie have a wonderful bond. We had a great time with them and they gave me some great ideas to do with Ashleigh.
Howard, Ashleigh and I, only spent the night and then we headed to the Hunter's Hope Medical Symposium. We had a great time. I don't feel like any of the scientist had anything new to present on, except Dr. Kurtzberg. Even what she presented on, I have already had several conversations with her about it. I loved having the opportunity to talk to Hunter Kelly's team of nurses and therapist. His Speech therapist gave me some ideas on equipment to try with Ashleigh. His nurses gave me some good ideas for care. His teacher was so positive and also gave me some ideas. His physical therapist had some great information also. I am always looking for new things to do with Ashleigh and I worry that I am not doing enough for her. Hunter's team taught me that I am doing what I can and they reassured me that Ashleigh is getting the care that she deserves. Of course, we loved visiting with all the families. Great conversations, a ton of tears, balanced by alot of laughs. They added alot of new things to do at night, which was fun. Ashleigh did great until friday night (after seeing Dr. K that morning), she had a seizure. I called Dr. K and she gave me instruction on what to do. An example of how normal we are there, how accepted we are...3 Krabbe moms, who are nurses came to help Ashleigh. Thank you, Dawn, D'Anne and Michelle.
We left the symposium and went back to the Kristoff's to pick up Mackenzie. We were going to to to New Jersey for a few days but Ashleigh had a pretty bad seizure and Dr. K wanted us to stay put. The Kristoff's have everything we needed to care for Ashleigh. The seizure affected Ashleigh's breathing and it was not safe to travel. Even with Ashleigh's issues, we had a good time visiting with them. They are an amazing family and I could only hope to have the strength that Pam has.
We left there and drove through the night back to North Carolina. Ashleigh was fine the first day we were home, but ended having some problems the next day and going to clinic.
Ashleigh has had alot of breathing problems and requiring alot of oxygen. She did have a UTI but nothing tested in the airway. She had an x-ray, that shows that Ashleigh is not using a small part of her lung anymore. This concerns me, but Sue said it is okay. Her sleep apnea is giving her alot of problems. She alarms several times a night, even with oxygen on. We are going to caffeine level tomorrow.
We are also staring her 4 YEAR POST TRANSPLANT studies. We will start with a blood draw tomorrow, testing her immune functions, donor count, enzyme level, how her organs are working and her blood counts. She will also get IVIG, and another blood test to see if she will need to replace her blood that we took from her earlier in the day. It will be a long day.
Next Tuesday, we will go see Dr. Escolar for her developmental evaluation. It is an emotional day, hearing all the things Ashleigh can't do. I am going to try to focus on the skills that Ashleigh has gained since our last visit.
I do not know the rest of our schedule yet, but the list is long...and we keep adding more test. She will have a MRI, crying capacity (checks lung function), ECHO, EKG, EEG, Evoke Potential, nerve conduction...I am sure I am missing some of the normal studies that are done on all transplant patients. We added a bone density (to check to see how thin her bones are, she has osteopenia from all the steroids and lack on use of the bones) and a 48 hour EEG (due to all the seizures she has had lately).
Ashleigh has had a couple of very different, much longer and more violent seizures. Causing her entire body to shake and her vitals to jump all over the place. We have increased her medications to try to control them.
Howard started his new job at Ft. Bragg, it is a bit of a drive but we are grateful for the employment. It also keeps us with military insurance, which has been wonderful to Ashleigh. Howard seems to like what he is doing and the people he is working with. We are looking for a house, but we have not found one in the area that we want yet.
Mackenzie starts school in a couple of weeks. She is nervous about starting second grade and she is excited to learn more. Dr. Escolar wants us to continue to focus on Mackenzie's studies, to build her confidence.
We have been busy building our lives here. Being together as a family has been amazing, wonderful and we are all happy!
I will update as we get study results back. Sorry for taking so much time off...I will be better about updating!
Tuesday, June 19, 2007 10:02 PM CDT
HOWARD IS HOME!!
He has to do some stuff at the base and he will be free to go in a couple of days!! More to come about the reunion tomorrow, along with pictures.
Friday, June 8, 2007 9:37 AM CDT
Ashleigh and Mackenzie are doing great. Mackenzie comes home tomorrow to start her summer camp. Ashleigh is doing great. She had a couple break through seizures, but they are better. She is up in her stander now, watching Clifford. She keeps smiling, so I think she is loving being up. I sent a email to a few of you with Ashleigh standing, without her stander, being supported by her therapist, but the important part was that she can put weight on her legs. That is a huge accomplishment for her. I will have the pictures post on here soon for all of you to see. We have clinic on Tuesday to get Ashleigh's medication for traveling, IVIG infusion and who knows what else we are going to give her to protect her for this trip.
Tuesday, June 5, 2007 5:04 PM CDT
Mackenzie will be a quicker update. She is playing by the pool with a couple of friends. She was afraid of the aquarium, she thought the sharks would get her. I don't know why. She is happy staying home, I thought it was because of Ashleigh, but she never really cared to be in public, even when she was a infant. She don't miss me! She will be back on Saturday, to start summer camp.
Ashleigh has been up to her little tricks. Secretions pouring from her mouth, temp of 39.2, requiring oxygen BUT laughing and happy as can be. She is enjoying some mommy time. We haven't gotten to go for walks because of her secretions and O2 requirements, hopefully it will pass soon. We were a bit concerned about her lungs, but it was a false alarm. She has a fungal culture pending, but Dr. K thinks we just need to switch some medications around, her body has become immune to the one she is on.
Dr. K was thrilled about her hips being back in place. She does want us to bring her stander and all of her equipment with us to NJ. We talked about what she is sending us in our "medical kit". Wow, HYSDROCORTISONE (IV), if Ashleigh gets a fever, I will stress does her with steroids, SOLUMEDROL (IV), if Ashleigh has airway issues with low satruations, she responds very well to it, ROCEPHIN (IV), if she spikes a fever or shows any sign of infection, ATIVAN (suppositories), if she has seizures that I can't get to stop. It was kind of funny, I was fine with the IV stuff, you know access her port, run the IV, flush the line, hep-loc. Not a big deal. I have never given a suppository. I told Sue, she will have to talk me through it if we have to use it.
Everything is still on track to go to New Jersey. I am taking Mackenzie and Ashleigh to the zoo while we are there. Cape May has a awesome zoo that they will love. I am not sure what else. Oh, Howard loss so much weight, I have to get him some clothes while we are there.
I am so excited! Our family will be back together!!
I filled out my forms for the symposium. I can't wait to see everyone and meet the new families! I love being up there, we are "normal". Ashleigh gets a ton of loving!! Howard is already asking if "that woman that always tries to steal Ashleigh is going to be there". He is referring to Michele Leeker! We are also planning a great trip to see our wonderful friends the Kristoffs.
Thank you to all of you who have stuck by us this past year. We will be forever grateful for your support and understanding of what this year has been like for all of us.
Thursday, May 31, 2007 7:29 AM CDT
Quick update...
Ashleigh has been having alot of secretions. She has times with labored breathing and turning a little blue. We are going to change around some antibiotics and get a x-ray. She had a great day of therapy yesterday. She even rolled from side to side with the help of her PT, but Ashleigh brought her head with the turning all by herself!! She has PT, OT, ST coming today. It is a little too warm for a bike ride, but hopefully we can squeeze one in before these storms hit us. Ashleigh loves being on her bike and outside. However, being in the stander has become a favorite indoor activity.
Mackenzie got her hair cut up to the middle of her neck yesterday. It looks great. I spoke with her new "friend", the doctor that Mackenzie will have playdates with to talk about her emotions. She let me know some things she wants me to try, the things she likes us doing and the things she thinks we need to address. She was great. She also reassured me about our parenting and the fact that Mackenzie is like every other child her age. She thinks Mackenzie has a little depression and some control issues but she thinks they are normal. She said children are always comparing themselves to other children at this age, Mackenzie is seeing that she is different in school because of the low tone and at home because of our family situation. She thinks once Howard is home and we settle into a home, than that will help her alot. She thinks Mackenzie can bounce back quickly! Kenz is also leaving in about 3 hours to go to NJ, she is very excited and has 10 days packed with things to do. Her OT consult will wait until mid-July.
Ashleigh and I are going to spend some time snuggling, taking walks, reading books, packing for our trip to NJ, getting ready for Howard to come home and who knows what else. Hopefully, we will stay out of clinic as much as we can!
Oh, I looked at a house. The floor plan was great, but the back yard was terrible with "green space", nothing over 6 inches can be cut down...well that was half the yard! The house hunt will go on...
Wednesday, May 30, 2007 6:37 AM CDT
To say we have been busy would be an understatement!
Mackenzie is going to be flying to New Jersey tomorrow for 10 days. She is excited to go and see her friends and family. She is making plans for a great summer.
She will then come back down here for summer camps for a week, chess club and American Girl Dolls. She is excited about the camps.
We are then all heading to New Jersey for about 10 days, as long as Ashleigh is doing okay.
Mackenzie also made two new friends, both are her age and have siblings that have gone through transplant. Oh, when she comes back from New Jersey, she is going to a slumber party for a friend. She just wants Mackenzie there to celebrate her birthday with her, no one else. What great friends!
Ashleigh has been awake and so alert. Answering questions and trying out her new equipment. She loves being up in her stander, she acts like such a big girl when she is up there. She identified 6 colors for us and then 5 shapes. She is getting a communication board to tell us when she is hungry or needs a diaper change. They also want us to give her a special chore everyday.
Ashleigh is still fighting airway infections. We just can't seem to get them under control. Dr. K is making us a "medical kit" for our travels. I am expecting IV steroids and antibiotics in it...just a guess. They seem to be our miracle drugs. Ashleigh seizures seem to be under control. We have not seen any lately. I think we are finally had at good dose for her. Ashleigh's schedule is full...
PT - four times a week
OT - four times a week
ST - four times a week
School - once a week
massage - every two weeks
Aquatic is starting up again, it looks like it will be twice a week, as long as we do not need her port accessed.
I also called a man about coming out to have music therapy. He does some music classes for handicap children at a school in Raleigh. Dr. Escolar is looking into a saddle for her to have hippotherapy! I am not sure how we will fit it all in but she will love all the attention and fun activities.
We are also planning our trip to the Hunter's Hope medical symposium. On the way there or back (we are not sure yet), we are going to visit the Kristoff's. I am excited to see Pam, she is a great friend, who understands our life. I haven't told Mackenzie yet, because she is going to be over the top excited to see Katie.
There is a bunch of other things we are planning but I will update you as they become final. Thank you for your incredible, unconditional support. You all have been so amazing to us!
Thank you for the emails about Howard. He is doing well, tired and ready to come home. I can't give any details but I can say...SOON!
The Rainbow of Heroes Walk raised $181,000! That is awesome! Thank you to all of you who sponsored Ashleigh's Army!!
Saturday, May 26, 2007 6:40 AM CDT
I am now the proud mommy to a 2nd grader! Mackenzie had her last day of school yesterday. They had a wonderful, fun closing assembly. After her early dismissal we went to PF Changs for lunch with her "best" friend, Frances. Mackenzie then went to Frances's house to play for a bit. As soon as she got home, we went to a good-bye party for another transplant family, the Rieg family is headed home after a year and a half of being here. I am going to miss Shannon and our great, usually extremely funny lunch dates. She has been a awesome friend and I am very grateful for her. Shannon, I will save my birthday present until you get back...;-)
I have some great news about Ashleigh! We went to orthopedics at UNC-CH on Thrusday to have Ashleigh's legs casted. Dr. Campion was great. He didn't cast her legs (yeah!), he ordered her some knee braces that he felt would be better for her legs. He does not want us to use the ones we had anymore. The new ones will be here in about 2 1/2 weeks.
Our long time followers may remember that they wanted to do hip surgery for Ashleigh's two dislocated hips. Well, we did hip x-rays and they are no longer dislocated. Dr. Campion thinks the botox helped release the tendons that were pulling her hips out. Ashleigh is allowed back in her stander. She has been in it twice already and she loves being up looking around.
Ashleigh is still struggling with her airway infections. She is on a inhaled breathing treatment for it. I am talking to Sue about Ashleigh having an EEG and MRI. She is not scheduled until July/August, but I am hoping that we will be able to do it a little early this year because of some issues that she is having. Plus, with all the travel that we will be doing, I would feel better to know that those two things are stable.
Off to start our day.
Sunday, May 20, 2007 8:40 PM CDT
Fair warning, this will be a huge pity party!
I am sure most of you have thought about how you would like to die, how you would not want to die. I know I have.
I would like to die in my sleep, wouldn't everyone? Every other way is not imaginable to me.
Ashleigh has been wonderful. She has been smiling, laughing, awake, she just looks the best she has in a long time. She has some bad days, sometimes for a couple of hours, but she has been so interactive and seems so happy. I have never been so comfortable with were Ashleigh is since she was diagnosed almost 4 years ago.
I would think I could get past these bad memories. Four years ago today, we were admitted to AI duPont Hospital for Children in Wilmington, Delaware. We began the search for a diagnoses that will take her childhood from us...from her.
I will always be grateful to the doctors who diagnosed her so quickly. For their, information and advice that pointed us to Dr. Kurtzberg and Duke. Dr. Renwick, Dr. Falchek, Dr. Arch, Thank you.
I had a dream that Ashleigh was asking me to let go. She was tired. Suffered so much. She looked beautiful, but yet sad. We were sitting and I was asking her questions. I am not sure where were in the dream. I thought we were outside, but there was hospital stuff there. I asked her her favorite color, she said purple. I asked her if she was hungry, she said no. I asked her if she was happy, she said yes. I asked her if she wanted to leave, she said yes. I asked if she wanted to be free, she said yes. I asked her if she knew I loved her, she said yes. I kissed her and told her to go. When I woke up she was smiling at me.
Good-night.
Saturday, May 19, 2007 8:41 AM CDT
Quick update...
Ashleigh has had a good couple of days. She slept a bit yesterday, but was awake, laughing and playing last night.
She has already had a few smiles this morning.
She has a very busy week with therapy, teachers and appointments coming up.
Monday: 10am - PT, 11am - ST, 2pm - OT
Tuesday: 8:30 - clinic, 10am - teacher (in clinic)
Wednesday: 10am - communication team with her - ST, 11am - PT, 12:15 - OT, 1:30 - ST (from the school
Thursday: 8:30 - legs will be casted at UNC-CH, 10am - ST, 12noon - PT, 2pm - OT
Friday - 8:45 - OT & PT (co-treat)
This does not include feeds, baths, medications. I am tired for her! Ashleigh has two of each therapist. It also does not include Vision, Massage and music therapies.
Mackenzie went to a friends house after school yesterday. Her whole class did, for a party. Then she went home with a different friend. Tonight she has a different friend sleeping here. Church in the morning. She has a fun, exciting weekend planned. I am happy for her to be around all these children. Next week is her last week of school. She will then have a week off for us to do things and then start summer camps. We will then head to New Jersey mid-June for some time with friends and family, and then up to see the Kristoffs and the medical symposium. Of course, all plans depend on Ashleigh's health. We have learned not to write anything in concrete...Ashleigh has plans of her own. I took Ashleigh into a couple of public places a couple of weeks ago and she has been fighting infections ever since. So we will limit ourselves again to the closed public places.
Howard is doing well, he said it is getting hot over there again. He is hoping to be home soon.
I have to thank "a few caring friends" for the incredible birthday gift. Wow, thank you so much. I will completely enjoy it. It was so kind of you all. I do however, wish to know who you are!! Thank you, God Bless your beautiful hearts.
Thursday, May 17, 2007 10:31 PM CDT
Where do I begin...
Ashleigh is back on antibiotics, she didn't test for anything, but there is a chance she was exposed to a airway infection so we need to treat it. Ashleigh's history of airway infections causes us to be cautious. Any of these infections could turn dangerous for her so we will always treat any risk. I went out with a few nurses a couple of weeks ago, they said that when Ashleigh was admitted to the hospital in January for RSV. They did not expect Ashleigh to be able to beat it. They said no one did, including the doctors. Well, thank God, Ashleigh was able to beat it. Hopefully, she will continue to be this strong.
Ashleigh was full of attitude today. She kept turning her head away and would not look at anyone. Blowing bubbles with her spit. Such the lady! She had a slight fever this morning, but it came down. Rash on her face and back...treating with protopic. Hopefully we will not have to start dacluzimab back up. Ashleigh can not receive vaccines until she is off all her steroids, which...yeah, that is not anytime in the next 6-12 months! As long as she is having the breathing issues and rash, she will stay on Orapred. Dacluzimab will lower her immune system even more...pushing vaccines very far into the future.
The communication team will be here next week to set Ashleigh up with her devices for her to talk to us. Thursday she will have her legs casted.
Mackenzie is set up for her appointments to get her therapies started. She is also starting back with horseback riding. We are going to hold off on piano until we see how OT goes. Dr. Escolar thinks the horses will be wonderful for her self esteem along with her balance.
Parents who have taken your children know what a Dr. Escolar visit is like. I do have to say, it was much different taking Mackenzie than when I take Ashleigh but it is still emotional. I am very grateful that Dr. Escolar was so kind and quick to act on our concerns. I am still trying to process alot of the information and I am sure I will have many questions after I get the final report.
Thank you Edie for the American backround!
Thank you Chris for all the advice this past week plus!
Thank you for the birthday messages, ecards, calls, cards!
Thank you to those who shared the day with me! It was wonderful...thank you for the wine, gift card, trivet, balloons!
Thank you, Babe for the roses! I love and miss you.
Thank you, Pam and Megan for your help with Mackenzie.
Thank you, Bill for going to the fathers special with Mackenzie.
Thank you, Michele and Heather for your help and putting up with me this week.
Thank you, to Ashleigh's Army for a great day, even in the rain.
Thank you to our nurses and therapist for the care you provide and for believing in the HOPE of life.
Thank you, Amy R. for always checking in and still caring.
Thank you to Sue and Dr. K for the HOPE you give us.
Thank you, to all of you for your unconditional support, prayers and love.
I think this list can go on forever, please don't be upset if I did not mention you this time. I am still running everything you all have done for us...the list is long and we are forever grateful for all of you.
Good Night.
Monday, May 14, 2007 6:48 PM CDT
Ashleigh is still fighting her airway infection. She is doing better, but still having some small issues. We are not going to clinic in the morning, Dr. K gave us off. Ashleigh will have a very long clinic day next week. We started Ashleigh on an inhaled antibiotic, hopefully it will give her gut a chance to heal some. Dr. K is not concerned with her bleeding. Her lamictal (seizure med) is still not at a level that they feel with control the seizures. We will do another increase this Friday. Lamictal has to be slowing increased because it can cause "serious, sometimes fatal skin rash". You have to love drug warnings!
Ashleigh had a wonderful day, full of smiles and laughs. She had speech and physical therapies. Jenn had Ashleigh answering questions, doing puzzles and picking out her favorite music. Jamie gave Ashleigh a great stretch and took her for a bike ride.
Okay, Mackenzie...
Mackenzie's teacher's recommended an OT consult. Me, being the mental parent that I am, contacted Dr. Escolar. The developmental doctor at the UNC that treats Ashleigh. She took Mackenzie in right away. Mackenzie had a 5 hour exam, full of test, OT consult, phychological exam, IQ test, neuro exam, eye exam, hearing exam...yes, it was a full day. Mackenzie was extremely patient and really enjoyed herself.
Today, I had a hour and a half meeting with Dr. Escolar to discuss the results. Some were great, some were a little hard to hear.
Although I do not have the final report, this is the basics of what we discussed...
Mackenzie's IQ is higher than the average child her age. However, her visual perception and fine motor skills are very far behind. Her fine motor skills graded at a 4 1/2 year old and her visual perceptions was 5 3/4 year old. However, Mackenzie has been able to intregrate them into a 6 1/2 year old level. Dr. Escolar thought that was wonderful, if she could not, Dr. E said she would be concerned.
As Mackenzie gets older, she is realizing that she is not at level with the other children with her skills and it is hurting her self-esteem, causing her to act out. She has low tone, causing her to have to work against gravity and use more energy to do things. In return, Mackenzie does not want to get involved with basic playing that involves alot of movement...such as sports, climbing and so on.
Mackenzie is working so hard on her fine motor skills that it is affecting her school work.
Mackenzie is also showing signs of depression and food adversions. She will start seeing a therapist to help her through these emotions and help build a stronger mind.
Dr. Escolar also thinks Mackenzie should have OT twice a week. She thinks she will show some huge gains over the summer but would like to have some equipment for Mackenzie to be able to focus more on her studies. Mackenzie will be getting a computer that has a "learn to type" program on it. We will use the program for 5 minutes each day and slowly increase her time. She will use it for her writing in class. As her motor skills improve, we will slowly remove the computer from class. For example, if Mackenzie has a book report to do, she will hand in a typed report rather than a hand written.
The good news is that Dr. Escolar said this is common and she will show improvement with therapy and building her self-esteem. Dr. E said her daughter had the same issues. Most children out grow it by 5th grade.
Mackenzie is also having problems tracking all the way across. She stops in the middle and refocuses her eyes at mid-line. OT will be able to help with that also.
I am sure I have more to fill you all in on but I have to go read a book, run an IV, draw some meds, and hopefully get to bed at a normal time.
Thank you, Good Night
Saturday, May 12, 2007 9:07 PM CDT
Ashleigh once again has an airway infection. Thursday, she had difficult time trying to breathe. I took her to clinic. Sue gave her a large dose of IV steroids. They cultured her airway and Ashleigh was not waking up. Sue lifted her eye lids to see Ashleigh having seizures. She gave her a large dose of IV Ativan. It did not work. She gave her another dose. Sue said it was enough to knock us out for a week. It took some time but Ashleigh then stablized and we headed home. Ashleigh is back on IV antibiotics and breathing treatments. She is showing improvements. Ashleigh's vitamin K is low, so we increased her dose. She has some red marks from bleeding. They will bruise but hopefully we have it under control now. Her clotting factor is low from the high doses of antibiotics. Her white count is high...21.9!
I meet with Dr. Escolar on Monday for Mackenzie. We will most likely have an MRI of her brain at the end of the week. Most of what we are looking at can be depression related however, with the family history and a very scared mom we are going to cautious. There is some concern about motor skills, cluminess, and emotional issues. I really am not ready to go into detail with anything yet, maybe after my meeting with Dr. Escolar, I will have more information. Right now I would rather to just rant but it really would not accomplish anything, so I will just keep my mouth shut for now.
The Rainbow of Heroes walk was wonderful. It rained, I didn't get to see many people because we were all covered. However, it still seemed so beautiful. Mackenzie won the Sibling of the Year award. It think that was important for her to know that we all think she is a great sister. I can not thank the Family Support team and Dr. K for honoring her after such a difficult year. Thank you Marion for the talk last week...you always know just what to say.
Howard is doing well, we are starting to hear about a time line for him to return. I can't post it here, but it will be soon! A little earlier than we expected!!
Mother's Day...I can't even know where to begin. I am so thankful to have my girls and I think and pray for all the mother's who have lost their babies. I can not imagine their pain. When we become parents we have dreams for our babies. Never do we plan on MRI's, chemo, transplants, diseases, blood counts, therapies, running IV, accessing ports, never do we mothers think of coffins, burials, cremations, death. Until we sit in that doctors office and they tell us our little baby will die. How are we chosen. Is there really an Angel by God with his pen poised writing on a tablet? Does God really had pick us mother os children with special needs? There is so much joy in birth, life, love and Hope. I will never have that care free experience again. Krabbe took that from me.
I thank God to have my babies with me to celebrate this day and honor both Mackenzie and Ashleigh for the incedible gifts they have given me.
Happy Mother's Day! God Bless.
I just received this from a terrific mom and wanted to share it with all the wonderful moms that I am blessed to know. Thank you, Deb.
*Mothers*
This is for the mothers who have sat up all night with sick toddlers
in their arms, wiping up barf laced with Oscar Mayer wieners and cherry
Kool-Aid saying, "It's okay honey, Mommy's here."
Who have sat in rocking chairs for hours on end soothing crying babies
who can't be comforted.
This is for all the mothers who show up at work with spit-up in their
hair and milk stains on their blouses and diapers in their purse.
For all the mothers who run carpools and make cookies and sew
Halloween costumes. And all the mothers who DON'T.
This is for the mothers who gave birth to babies they'll never see.
And the mothers who took those babies and gave them homes.
This is for the mothers whose priceless art collections are hanging on
their refrigerator doors.
And for all the mothers who froze their buns on metal bleachers at
football or soccer games instead of watching from the warmth of their
cars, so that when their kids asked, "Did you see me, Mom?" they could
say, "Of course, I wouldn't have missed it for the world," and mean it.
This is for all the mothers who yell at their kids in the grocery
store and swat them in despair when they stomp their feet and scream
for ice
cream before dinner. And for all the mothers who count to ten instead,
but realize how child abuse happens.
This is for all the mothers who sat down with their children and
explained all about making babies. And for all the (grand) mothers who
wanted to, but just couldn't find the words.
This is for all the mothers who go hungry, so their children can eat.
For all the mothers who read "Goodnight, Moon" twice a night for a
year. And then read it again. "Just one more time."
This is for all the mothers who taught their children to tie their
shoelaces before they started school. A nd for all the mothers who
opted for Velcro instead.
This is for all the mothers who teach their sons to cook and their
daughters to sink a jump shot.
This is for every mother whose head turns automatically when a little
voice calls "Mom?" in a crowd, even though they know their own
offspring are at home -- or even away at college.
This is for all the mothers who sent their kids to school with stomach
aches assuring them they'd be just FINE once they got there, only to
get calls from the school nurse an hour later asking them to please pick
them up. Right away.
This is for mothers whose children have gone astray, who can't find
the words to reach them.
This is for all the step-mothers who raised another woman's child or
children, and gave their time, attention, and love... sometimes
totally unappreciated!
For all the mothers who bite their lips until they bleed when their
14-year-olds dye their hair green.
For all the mothers of the victims of recent school shootings, and the
mothers of those who did the shooting.
For the mothers of the survivors, and the mothers who sat in front of
their TVs in horror, hugging their child who just came home from
school, safely.
This is for all the mothers who taught their children to be peaceful,
and now pray they come home safely from a war.
What makes a good Mother anyway? Is it patience? Compassion? Broad
hips? The ability to nurse a baby, cook dinner, and sew a button on a
shirt,
all at the same time? Or is it in her heart? Is it the ache you feel
when you watch your son or daughter disappear down the street, walking
to school alone for the very first time? The jolt that takes you from
sleep to dread, from bed to crib at 2 A.M. to put your hand on the
back of a sleeping baby? The panic, years later, that comes again at 2
A.M. when you just want to hear their key in the door and know they are
safe again in your home? Or the need to flee from wherever you are and
hug
your child when you hear news of a fire, a car accident, a child dying?
The emotions of motherhood are universal and so our thoughts are for
young mothers stumbling through diaper changes and sleep
deprivation...
And mature mothers learning to let go.
For working mothers and stay-at-home mothers.
Single mothers and married mothers.
Mothers with money, mothers without.
This is for you all.
For all of us.
Hang in there.
In the end we can only do the best we can.
Tell them every day that we love them.
"Home is what catches you when you fall - and we all fall."
Tuesday, May 1, 2007 9:57 PM CDT
Ashleigh ended going to clinic today. She spiked a high fever and was coughing up yellow secretions.
Once again, she has another airway infection. She is on more antibiotics. Dr. K is concerned with the amount of antibiotics she is requiring so we are trying a new oral med.
Ashleigh is seems more comfortable. Dr. K thought she looked good. Ashleigh was awake looking around. Her skin was clear, no graft vs. host.
Tomorrow she has a big day, a team of therapist and specialist are coming out to fit Ashleigh with communication devices.
I will update about Mackenzie's visit with Dr. Escolar. It was a very long visit. Dr. Escolar and Dr. Martin feel Mackenzie does need OT. They said she can not localize her fingers. We are going to go over more of it in a week or two to go over the results of her testing.
Dr. Escolar and Dr. Martin are also very concerned about Mackenzie mental status. I think hearing others say that emotionally Mackenzie is having problems was extremely hard to hear. We are going to talk about getting her help.
Some of the things they pointed out, really surprised me.
I will update more later...
Friday, April 27, 2007 7:29 PM CDT
Wednesday, we did not have to take Asheigh in. Her crying and cramping went away. Dr. K thinks it was just from the antibiotics. Ashleigh had her therapies, went for a bike ride and had a pretty good day.
Kelly Brown came over to stay with the girls and I went out to dinner with Shannon (Copper's mom)www.caringbridge.org/visit/cooper and Jenn (Ashleigh's wonderful therapist)
Thursday, Ashleigh and I stayed home all day. Mackenzie had a friend come over after school. They had a good time swimming and playing games. Mackenzie has made some really good friends here.
Friday, Ashleigh had some therapy in the morning and then we had a day out. Ashleigh and I met two friends and their children for lunch and a little shopping. We had a good time and Ashleigh enjoyed being out. On our way back, we picked Mackenzie up from school. I was in folding clothes and I heard a noise. I thought it was Mackenzie playing horses (neighing). I walked out to tell her to hold it down and she was sitting by Ashleigh, pointing to her. Ashleigh was screaming, it was not neighing. Mackenzie helped Ashleigh through a seizure. Ashleigh is so lucky to have such a wonderful big sister.
Howard's mom (Sharon) is coming in tomorrow. We are going to a "pig pickin" tomorrow night, I think that is a BBQ in New Jersey.
Monday is Mackenzie's appointment with Dr. Escolar.
We still do not have a day to have Ashleigh's legs casted. I think we are going for pink cast. How cute will she be? I will post a picture of her.
Tuesday if Ashleigh is doing well, then we only have to drop off blood. No Dr. K clinic visit this week. Yeah!
Wednesday is the communication appontment. I am so excited to have a way for Ashleigh to communicate with us. She has made so much progress this past year. I think her first words would be "mommy, stop kissing me" or "leave me alone". Mackenzie thinks it be "Mackenzie quiet down with those horses"
One last thing. My friend Colleen is suppose to come down next week. She just found out that her father has an aggressive lung cancer and he will be starting chemo. Because of past medical problems and the damage that chemo does cause, he is in desperate need of prayers. Please add the Conaty family in your prayers. Colleens daughter, Amanda is a wonderful friend to Mackenzie and Ashleigh. Amanda's website is www.caringbridge.org/visit/amandaconatymoser
Thank you, God Bless
Tuesday, April 24, 2007 11:32 PM CDT
Okay, this will be as quick as possible. I am beyond tired.
Last week, I ended up not taking Ashleigh into the hospital on Thursday night. She calmed down a little and I convinced myself it was okay. Wrong!!
Friday, I took her to get the botox injections. It went smooth and then we headed to clinic to see Sue because of how she was Thursday night. Ashleigh was okay not terrible. After a few hours of being home, Ashleigh was seizing and having some issues. I did not want to repeat Thursday night, so I took her back in. Sue gave her IV Ativan and Ashleigh has been better (seizure wise) ever since.
Saturday, Ashleigh had a good day. Nothing excited, a couple of giggles but no smiling. Kind of a little chuckle under her breath!
Sunday, okay day. Pretty much the same at Saturday. A few small seizures, oral Ativan and she was okay.
Monday, lots of therapy...OT, PT and ST. A few giggles.
Today at clinic Ashleigh received her monthly infusion of IVIG, had a quick visit with Dr. K and headed home. When she woke this morning, she was very fussy. She cried at clinic when Sue was examining her and then again, after I started her feeds. Dr. K stopped her IV antibiotics and said we will watch her to see if her WBC goes back up.
Tonight at home she had some problems with cramping, retching, crying and bloody diapers. I called a friend to have her stay with Mackenzie so I could take Ashleigh back to the hospital. I talked to Dr. K and we decided to wait until tomorrow morning. If she is still having problems, I will take her in and start treatment for c-diff. The antibiotics she was on were "big guns" (as Sue calls them), so we could have torn her up a bit. We also held the rest of her feeds tonight and just gave her pedialyte. We will try feeding her again in the morning.
Ashleigh has 5 therapies tomorrow! Busy day!! Next week a team will be coming out to figure out ways for Ashleigh to communicate with us. We are very excited to have this team coming out. Next week, Ashleigh will also have her legs casted. She will get better results from the botox by casting her legs straight for a couple of weeks.
Monday, Mackenzie will be having a complete evaluation by Dr. Escolar. Her teachers recommended a OT consult because of problems she seems to be having with her fine motor skills. After emailing with Dr. Escolar we decided to also check her hearing, leg pain, head aches, along with everything else. So, Mackenzie will have the same work up that Ashleigh gets when we see Dr. Escolar but on her age level. Please pray that everything is okay. I told Dr. Escolar I know that she does not have Krabbe but you see alot of scary things down here and I can not image having something happen to both my girls, one is hard enough.
Howard is doing okay, he thinks they might stop his mail soon, so if anyone wanted to drop him one last note, you should do it now.
Less than two weeks away for the RAINBOW of HEROES WALK!! Anyone who wishes to donate, you have another week. Thank you for all your donations and kind messages for Ashleigh. She is an amazing little girl. Howard and I are blessed to have her and we are blessed to have the support of so many of you. Thank you.
Thursday, April 19, 2007 8:17 PM CDT
Ashleigh is having a ton of problems. We are heading to the out patient treatment room on 5200. Please pray she is okay.
Wednesday, April 18, 2007 11:02 PM CDT
Well, where do I start.
We were suppose to have off from clinic on Tuesday because I was going on Mackenzie's class trip. Ashleigh home nurse called to tell me that Ashleigh had a fever (101.2). I told her to wait a 1/2 hour and take it again, then call me back. 101.2 again. That is a extremely high temp for her. I told her to give her some tylenol and when I get back, I will take her to clinic.
Mackenzie's trip was wonderful. We had a great time and I always enjoy my time with her and her class.
Mackenzie went home with her friend, Anna (thank you Keath). I went home and packed up Ashleigh. Thank God we went in.
Ashleigh was pouring with secretions and her seizures were a mess. We started in a treatment room and was moved down to the day hospital. Dr. Kurtzberg came in 5 times. Ashleigh was given IV Ativan and Sol-u-medrol. She did not improve. She was on 6 liters of oxygen. We were about to be admitted but Sue let us go. Ashleigh had a few more seizures at home and settled down. Her oxygen requirements are down to 1 ml.
This morning was not any better. Sue and I should have had a direct line to each. Ashleigh had a total of 16 seizures today. She had a high temp (102.4) that we could not get to break. We already cultured everything yesterday, so we did not have to go into clinic. We ended up using motrin, which we usually do not use because Ashleigh is on Celebrex. The fever finally broke this afternoon. The seizures were worse because of the fever and infections.
Ashleigh is doing better now. She is awake, I haven't seen a seizures and no more fevers. She even smiled a little.
Okay, infections...Blood has not grown anything. Urine is not growing anything. Secretions are once again a mess. She has staph again. She is also growing gram positive rods, but the bacteria has not been identified yet. She has once again been started on two very strong antibiotics. Please pray that we clear these infections and control the seizues.
Two good things from the day. Mackenzie likes her school better than her NJ school because she is allowed to pray. How wonderful, she loves bible study.
As long as Ashleigh shows improvement we are going to take Ashleigh for her botox injections on Friday. I am so excited for her. I still do not know if she will require casting afterwards. I am waiting to hear from Dr. Escolar.
Still do not have an appointment time for Mackenzie to see Dr. Escolar.
Howard is doing well. Getting dates ready to come home. Nothing confirmed yet, but mail will be shutting down soon! Yeah!! Getting closer.
Okay, IV is done, heading to bed. Good night.
Friday, April 13, 2007 8:58 PM CDT
Ashleigh had her consult for her botox injections today, at UNC-CH. It went very well. Dr. Howard agreed that it would improve Ashleigh's quality of life to have the stiffness and eliminate some of the pain. Dr. Howard is an adult neurologist. He will be injecting each of Ashleigh's legs four times each. We talked about sedation and as of now, we are not sure what we will do. I am going to talk more about it with Dr.Kurzberg.
We came home and Ashleigh went to sleep. Her saturations dropped into the 60's and we had to put her back on oxygen. She also had a pretty big seizure.
Mackenzie is having some girls over tomorrow night for dinner and a movie. She is excited. I have to schedule an appointment for Mackenzie to see Dr.Escolar. I will update more about it when I know more.
Thank you, Keath, Ashley and Anna Low for joining Ashleigh's Army for the Rainbow of Heroes Walk
Thank you for those of you who have donated to Duke in honor of Ashleigh. I do get an email from the hospital tell me who has donated and we thank each of you for your support.
Wednesday, April 11, 2007 7:40 PM CDT
Don't know what causes those episodes. We can't figure them out. Today, Ashleigh looked amazing. She was awake, smiling, having incredible therapy sessions, a ton of giggles.
Days like today, make days like yesterday easier to deal with. Thank God for a beautiful day for Ashleigh. Now, if only we could do something about this weather, cold and rainy just does not work for Ashleigh to take bike rides.
Ashleigh is finally scheduled for her Botox injections. We have a consult on Friday morning at UNC-CH. Nervous but excited!
Good day for Mackenzie. She had a friend come over after school. Mackenzie was so happy. I love to hear her laugh.
Tuesday, April 10, 2007 10:06 PM CDT
Ashleigh had a tough day. She had alot of breathing and secreation issues. Dr. K was even suctioning her. She is requiring oxygen again and working hard to keep her oxygen up. She is pouring with white secreations. She was doing so much better over the weekend, and now it is all back
I cried most of the day. Thank God for Sue, who spent much of her morning trying to figure out how to help Ashleigh and supporting me. I really would be lost without her, especially this past year.
We do not really have a plan for Ashleigh. We will consider stronger antibiotics, but her white count is down, so the antibiotic that she is on seems to be working. Her steroids are still high.
Her skin was very broken out with graft vs. host. More protopic will be used.
Her seizures do seem a little better.
I am tired from a long, emotional day. I will update more when we know something.
Good Night
Monday, April 9, 2007 6:21 AM CDT
Easter was nice. We spent some time together in the morning. Mackenzie went to church with a friend, then headed to an Easter egg hunt. Ashleigh and I later joined them for a wonderful dinner and adult conversation. Yes, imagine that!! Adults!! Thank you so much, Megan and Dave for opening your home to us and sharing your holiday. We had a wonderful time!!
Ashleigh is doing better. Still requiring oxygen at times but I think we are slowly coming out of the woods. I am not concerned about her blood getting infected with HIB anymore. However, she did have a line break this past week so now we need to look out for other infections. Sue, NP, thinks that the antibiotics will destroy anything that could have entered the line during the break. Everything else is well. Mackenzie gets her report card today, it will be great, it always is. We will celebrate it tonight at dinner. Ashleigh has therapies today. I have to make some calls for both girls today. Just a normal basic day for us. YEAH!
Well, gotta get moving for the day. I will update soon.
God Bless.
YEAH, DR. KURTZBERG!! You are amazing!! This is an article that ran this weekend.
Health Care Heroes 2007
DR. JOANNE KURTZBERG
DUKE UNIVERSITY MEDICAL CENTER
Physicians on battling child disease
INNOVATOR/RESEARCHER: PROFESSIONAL EXCELLENCE AWARD
Dr. Joanne Kurtzberg’s team is testing the power of umbilical cord blood to treat children with sickle cell anemia, Tay Sachs and a range of other diseases for which no cure exists.
Kurtzberg is program director for Pediatric Blood and Marrow Transplantation at Duke University Medical Center.
Kurtzberg in 1993 pioneered the use of umbilical cord blood from unrelated newborn babies. By infusing children with stem cells taken from the discarded umbilical cords of newborn babies, Kurtzberg has shown she can treat and cure many childhood diseases. The procedure replaces the child’s defective immune- and blood-forming systems with disease-free cells, or it provides enzymes that are missing in children with metabolic diseases.
Her research studies are the first to demonstrate that cord blood transplants can save the lives of children with Hurler’s syndrome and Krabbe disease, two of the fatal metabolic diseases in which children are missing a critical enzyme. The missing enzyme causes progressive damage in the brain, heart, bones, cartilage, liver and corneas and typically death by the age of six.
Her studies also show that stem cells can repair much of the progressive brain and organ damage that occurs among children with these diseases.
In 2005, Kurtzberg served as an expert to Congress during the drafting of a bill that funds the enlargement of national cord blood banks. The banks store units of cord blood where physicians from around the nation can search and identify suitable units for their patients. Until a bill passed in December 2005, there was little federal funding to defray the considerable costs of collecting, processing and storing cord blood units.
As a caregiver, she personally answers patient calls and responds directly to e-mails from around the world. Her patients and their families return to Duke each year for an annual celebration and fundraiser to benefit children undergoing transplants at Duke.
Kurtzberg is also using cord blood to treat children with debilitating or life-threatening genetic disorders.
Friday, April 6, 2007 7:06 CDT
Another update...
Many of you have been asking what H-flu...all I really knew was that it was bacterial. Wednesday night I could not sleep so I looked up H-flu to see exactly what Ashleigh had this time.
I wish I didn't look it up, I wish I didn't know how dangerous this organism can be to Ashleigh, I wish she could come off of the oxygen and I wish she could be infections free. I have so many wishes for her...sadly, I feel they are so far out of reach at times.
Ashleigh has h-flu in the airway, it can cause pneumonia. Ashleigh is working hard to breathe and still requiring alot of oxygen. However, so far, Ashleigh's x-rays look good and there is no sign of pneumonia.
H-flu is also called HIB. We are vaccinated against it. Ashleigh is not protected against it because when she had her transplant, chemotherapy destroyed all her infant vaccinations.
If the bacteria enters the blood stream, Ashleigh most likely would not be able to fight it. H-flu in the blood can become bacterial meningitis. The treatment would destroy her engraftment. If she did develop meningitis it would move very quickly.
Dr. Kurtzberg is treating Ashleigh with a very strong antibiotic, much stronger than is needed. She does not think we need to worry about it moving, but of course, I am. We are constantly taking her temp, looking for bruising and checking for pain in her neck. Any of those symptoms we will go in the hospital.
Thursday, April 5, 2007 5:09 AM CDT
Quick update...
The medications that were suppose to put Ashleigh to sleep are causing her to stay awake. She is still having a lot of seizures, we are going to talk about have emergency seizure medications at home. High doses to stop a seizure if it is lasting too long. Our other option would be to take her in to the hospital everytime she has a long seizure. We are also going to talk about another EEG, looking to see if her brain is constantly seizing. If it is we will have to talk about ways to make Asheligh comfortable and call Howard home. We do not think this is the case because she is awake and alert, smiling and still active in her therapies. She is just having alot of seizures, too many to count.
I am also going to talk to Dr. K about the possiblity of the urine issue being calcium not being absorbed by the body. I am not sure if that is the case but worth asking. Her calcium is checked once a week and it is always in normal range. A little turtle gave me the idea (don't ask).
Waiting for some appointments to be scheduled...botox, new seating device, therapies and teachers. Also trying to set up music, vision, and massage therapies.
Mackenzie has her Easter concert and party today. We made rice krispy treats shaped like eggs and Mackenzie decorated them with icing. We had a good time.
Okay...need to get moving for the day...
Wednesday, April 4, 2007 8:13 AM CDT
Okay, I am back!! Grab a cup of coffee, a snack and be prepared for a very long update!!!
First, Ashleigh...Botox will be done a UNC, waiting for an appointment. Trying to come up with a way to sedate her. Ativan will not work, so we are talking about some other medications. We have had many, many issues going on. Feeds have been going fairly okay, she has a g-tube again...got rid of the g-j because I pulled it out (not on purpose) and Dr. K said we can just try the g-tube and see how she does. So far she is doing well. They do feel she is dumping her food sometimes, not everytime. Dumping syndrome is when they dump the food from the stomach to the intestines too fast. It is causing her to have breathing problems and cramping. Since it is not happening everyday, we are going to do anything about it, except slow her feeds down some.
Ashleigh's skin has been good, a little rash here and there but nothing too serious.
Ashleigh does have two infections in her airway right now, she is treating with IV antibiotics. Staph Aureus, she has often and we are not too concerned about it. She has it so much that it could just live in her airway now. We are a little concerned about H-flu. It is a bacteria that causes pneumonia. We are treating it very aggressive. With the infections also increased seizure activity. That is our main concern right now. Last week she had a terrible seizure on Tuesday. Wednesday, Ashleigh slept all day. Wednesday she required oxygen. Thursday and Friday we were in clinic, getting IV medications for allergic reaction to Zyrtec. She also had seizures in clinic. Saturday she was a bit better, Sunday was great, Monday, Ashleigh was blue several times and was requiring a lot of oxygen. We went through 11 tanks of oxygen in less than a week. We never did that before.
Yesterday at clinic, Ashleigh was fine until about noon. She started seizing and requiring oxygen. Dr. K sent her for a CT scan to look for fluid on the brain. It was negative, Thank God. Ashleigh received a dose of IV Ativan and seemed a little better. We came home. Dr. K had me give Ashleigh an insane about of seizure drugs last night, to try to get her levels high fast, hoping to stop the seizures. Dr. K said that I was given her so much that it would put me and Dr. K to sleep for 5 days. Ashleigh is still awake....she is so use to these medications. She needs many prayers that these seizures will stop soon...
Even with all the complications she is having Ashleigh has been happy, smiling and playing. She has had great therapy sessions and even started more therapy and a school teacher! Ashleigh's goals are to find more ways for her to communicate with us. I am so thankful that we have Jen for a speech therapist. She has given Ashleigh so much, an outlet to express herself and so much hope for communicating. Jen is one of the best people working on Ashleigh...we have such a great team right now!
Okay, I think that is it for Ashleigh right now...well, I am sure I am forgetting some but I will catch you up as I remember.
Mackenzie had her surgery on March 16th. She did so great. She was so brave and boy was she chatty to the team of doctors! We went first thing in the morning, she let them do all the pre-op stuff without one objections, she even put the hospital gown on but did let us know that is was not very pretty. They gave her Versed to relax her before taking her into the operating room. She became so silly. Ashleigh has had versed many times but I never to to see that side of it...funny stuff. I went into the operating room until she was asleep, well I have to just share a few stories. Mackenzie was asking what they were doing there, but because she thought they were other people, family and friends. It was funny with her Jersey accent. They she tried to take her gown off on the operating table. Her daddy would have having a fit! She told the whole operating room that I am going to be 35, I am on a diet and I am doing yoga. Her mom-mom (who was in the waiting room, thank you Sharon for coming to help out) is 60, she is on a diet too, but she can't do yoga. Yes, it was fun! After the 3 1/2 hour surgery, we took her home, she took a nap and then she was fine. The next day we took her for her first pedicure and manicure. She was excited. I was so proud of how well she did.
Mackenzie is doing great in chess club and school. She is going to start piano and horseback riding back up. We are booking a few summer camps for the month of June, hoping Howard will be home sometime in July.
Howard is doing well. He has been keeping busy. On his down time, he is watching movies and reading. He is trying to eat a little healthier so I have orders not to send him junk food. He is now counting down how many hair cuts he has left over there. He gets his hair cut ever two weeks so the number is less than counting weeks or days. Below is a link that I think is important for every American to look at.
http://www.youtube.com/v/ervaMPt4Ha0&autoplay=1
As for me, I am drained. I had a few medical issues but they are all cleared up now. I am looking for an outlet. Trying to read more...if you know of some good books please let me know. I have to say emotionally I have been better. I just want to settle into our new lives here, Ashleigh has so much going on and Howard's deployment has been getting to me. I just want us to be together! I have been getting together with a friend every other Wednesday for lunch. It has been great fun. Also, the parents and teachers at Mackenzie's school have been so wonderful to us. When I talk about the kindness that we have received from her school, it really brings tears to my eyes. I just can't explain it.
Well, I better go for now, I know I will have more to fill you in on, I am just going blank and I am heading to lunch with a friend.
Oh, one more thing. I am hoping someone out there will have some information on this. It might be a little much information but it is really bugging me...
When Ashleigh goes to the bathroom, her urine will come out and then all this white stuff comes pouring out of her. It has been tested for bacteria, viral and fungal infections and so far it is negative. I am very concerned about it, but no ones knows what it could be. Has anyone else seen this with their kids?
Okay, gotta go...Thank you all so much for your continued support for our family. You truly have carried us through some very difficult times. Without you all, this journey would be impossible.
Oh, one more very important thing... On May 5th, Duke will be holding the Rainbow of Heroes Walk. The walk will benefit the family support programs for the transplant program. They have an amazing program here that helps the children, family and siblings. They have a party to get the the siblings together, children who are all going through the same thing. They have scrapbooking, meals and haircuts families who are inpatient. If you look at Ashleigh's pictures you can see Ashleigh getter her hair done. They help people with expenses like parking and give gift cards for food and gas.
We have formed a team that will be walking. It will be Ashleigh's Army. My friend Colleen will be making shirts. Anyway, we are trying to get as many sponsors as we can so any interested please email me. I will be adding a link this week to you can use a credit card on Duke's website. Thank you in advance for your support for this incredible program and honoring Ashleigh.
God Bless
Friday, March 16, 2007 1:23 AM CDT
Hello to all,
This is just a quick entry to let you know Michelle's computer had to be sent to the manuacture for repairs. She will update as soon as she can.
I spoke to Michelle yesterday and Ashleigh is doing well. Michelle and Ashleigh got a day off from clininc on Tuesday. Mackenzie is on spring break and Michelle was given orders from the Dr K. to enjoy some family time!! That she is doing.
Mackenzie goes in for surgery today and when I talked to her she said do not worry I will be a BIG girl. Which I know all to well. She is growing up so fast.
Well I am going to sign off now. I can not wait until I get ome to see my girls. I miss them dearly. Thank you all for your tremendous support. It means the world to us.
With love and hope (Michelle's great saying),
Howard
Friday, March 16, 2007 1:23 AM CDT
Hello to all,
This is just a quick entry to let you know Michelle's computer had to be sent to the manufacture for repairs. She will update as soon as she can.
I spoke to Michelle yesterday and Ashleigh is doing well. Michelle and Ashleigh got a day off from clininc on Tuesday. Mackenzie is on spring break and Michelle was given orders from the Dr K. to enjoy some family time!! That she is doing.
Mackenzie goes in for surgery today and when I talked to her she said do not worry I will be a BIG girl. Which I know all to well. She is growing up so fast.
Well I am going to sign off now. I can not wait until I get ome to see my girls. I miss them dearly. Thank you all for your tremendous support. It means the world to us.
With love and hope (Michelle's great saying),
Howard
Wednesday, February 28, 2007 11:36 PM CST
Sorry for the lack of updates! I am not really sure where the time has gone.
First, I missed Howard's birthday. Last week, the 21st, he turned ... Happy Birthday, Babe. I love and miss you!
He also received a promotion! He is now CPT Howard Gwin! Yeah!!
Mackenzie's surgery was rescheduled until the 16th of March. She was not feeling well and she had a herpe breakout in and on her mouth. I am very nervous about the surgery. I know it is not a major surgery, but I am just nervous. It is sad but I am use to taking Ashleigh into surgeries, not Mackenzie.
Okay, Ashleigh...she has had some incredible days. Smiling, laughing and doing wonderful. However, the last two Tuesdays, at clinic, she has had some problems. Requiring oxygen and having seizures. Dr. K said she is starting to take it personal. One a good note, she has been using her tongue more, moving food in her mouth and spitting! She spit at the nurse and Dr. K. I know that is gross but for Ashleigh to have that skill, it is exciting.
Last night, after clinic, I went to hook Ashleigh up on her feed. Her night feeds go into her "J", small bowel. I pulled at her tube and somehow I pulled the tube out. The tube is held in with balloon of water. I pulled the balloon out, the rest of the tubing was still in her. I re-inserted the balloon and called clinic. Sue and Dr. K thought that it would be okay for the night, but didn't want me to feed her, only give her her medications. I gave her her 8pm medications and she started to cry. The tubing was not in place. I held most of her midnight medications, just gave her her seizure medications.
First thing this morning, I went to clinic to have the tube replaced. Dr. K said since Ashleigh has been tolerating her feeds better, we can try a "g" tube, feeding directing into the stomach. Judy, pediatric surgery came up to clinic and put the new button in. It was changed in a couple of minutes. They gave Ashleigh some IV fluids, since she did not eat Tuesday night. They had me feed Ashleigh into her stomach and Ashleigh started having some retching issues. Somewhere along the line, the nurse did not understand the orders and sent us home with Ashleigh having problems. I was so mad, thinking it was the doctor that discharged us. I was leaving clinic when my cell phone rang, Mackenzie was sick at school. I went to get her. Ashleigh was having problems with secretions and oxygen in the back seat of the car. I get them both home, hook Ashleigh up to her pulse-ox, suction her, put her on oxygen, change Mackenzie in to PJ's and set her up to relax on the couch, watching movies.
I called Sue, having a fit that we were home with Ashleigh having so many problems. She sent Ashleigh some IV fluids and solu-medrol (steroids). Ashleigh has now recovered, but we are going to give her gut a chance to heal after having the tube replaced and try feeding her in the morning. Hopefully, we can feed her in the morning, if not, we will try IV for a couple of nights. If we can not feed her, she will have to go back to a "j" tube.
Okay, I am sure this update is a mess. I am sorry, just too tired! I need to get some sleep before another crazy day!!
Forgot to add...Today, March 1st, is our anniversary of being airlfted to Duke. One year ago today, we were brought here in a medical jet. The things we celebrate...
Tuesday, February 13, 2007 8:13 PM CST
Another quick clinic day! Out by 2, then waited for some meds. at pharmacy and visited with some friends.
Dr. Kurtzberg was very pleased with how Ashleigh looks. She really has done well with the steroid wean and discontinueing the Dacluzamab. We were concerned that when we weaned the steroids, Ashleigh would have some Graft versus Host issues (requiring the dacluzamab to be added back), but she really looks great. Dr. K weaned the steroids again, hopefully Ash will be off in a couple more weeks! If she is able to stay off steroids and immune suppression medications, we will start giving Ashleigh her vaccines. She will have to start from the beginning since the chemo killed all the ones she had before transplant.
We are going to start feeding Ashleigh into her stomach! This is wonderful news. She has been getting fed directly into her small bowel. We are only going to start with about 1 ounce a day, then we will start checking her pancreas to make sure it is not flaring up again. We will increase the food every 5 to 7 days. I hope this works and Ashleigh can have the g-j replaced with a g-tube.
Dr. Kurtzberg was happy that Ashleigh has been awake more and we have not seen any seizure activity! Yeah!! We will check drug levels next week.
Mackenzie has a cold sore(herpes) on and in her mouth and her school had a case of the chicken pox. I was concerned about both of them since they are in the same family of viruses. I asked about placing Ashleigh on something to protect her, but Dr. K said she will get some protection from the IVIG. She asked me how much Mackenzie weighed, then placed Mackenzie on Acyclovir. Anyone who knows Mackenzie knows that she is not good at taking meds. I told her that Dr. Kurtzberg said she had to and she was not happy but said "fine". This also may hold up her surgery. We go to pre-op on Thursday and depending on what her mouth looks like, we may have to postpone it, again.
Tomorrow we have Mackenzie's Valentine party at school, then a visit to the fourth grade class (they made something for Ashleigh, again). At Christmas they made her a great blanket! Ashleigh can not go into the school so she will be home with her nurse. Then I have a ton of errands to run, get ready for dinner and Mackenzie has chess club.
I have been going to bed very early the last couple of weeks! I am not sure why I am so tired, it was even hard to get out of bed this morning. I get up between 5:30-6:00 and it was dark in the room this morning, I just wanted to snuggle in with my girls and skip school and clinic....yeah, we will have to save that for a weekend. I tried to get out of clinic next week, I was told no, that is our day to be seen.
Again, thank you for your wonderful emails and message.
Saturday, February 10, 2007 9:00 AM CST
The girls, Mackenzie and Ashleigh are doing well. Ashleigh is about to get her second dose of antibiotics. Mackenzie is drawing. Mackenzie and I are going to look at a house this afternoon...otherwise we are watching our movies and hanging out this weekend. Next week is going to be busy...
Monday is free. Tuesday, Ashleigh has a long day at clinic, Mackenzie has a playdate. Wednesday, I am room mom at Mackenzie's Valentine party and we are having a few mom's and their children over for dinner. Thursday, Mackenzie is having pre-op in the morning and we are going to get some books and movies for the weekend and going to have lunch. Friday, Mackenzie is having her oral surgery. We will then be in for the weekend, with a 7 year old who is going to play up this surgery to win an Oscar. We are saving the books and movies for part of the "act".
I have received over 200 emails asking for the password and I must admit I was shocked that you were all reading about our journey. I received many emails telling me what an inspiration our family has been. How Ashleigh's story has changed people's lives. How Ashleigh's story helped a mom find a diagnoses for her child, even though it was not Krabbe, the child had a different metabolic disease. How nurses, doctors, soldiers, old school friends from me, Howard and Mackenzie read every morning. Two soldiers and a military family assistance employee have made Ashleigh part of their morning routine. A woman who found Ashleigh's story because of an article about the NFL Quaterback Curse (referring her to Hunter Kelly's story and onto Ashleigh and many other Krabbe and Leukodystrophy.) I could go on but this is what I really wanted to share with you...
I sat and cried this morning because of all of your kind words. I saved them under a file for "support and prayers". I will read and re-read them everytime I am having a bad day, which seems to happen often lately. I understand people who do not post on the website, but please know that you are always welcome to email me and Howard. I have forward your messages on to him also...I had to condense them into a couple larger emails, too many to send them seperately. :-)
Most of the emails said what a strong person I am. Well, I have a confession. I am not. I do breakdown, at night when I am up late at night, I cry, hold Ashleigh's hand and question why. I want a break and I am angry that my daughter is suffering and one day she will leave me. I just don't think it does anyone, especially Ashleigh, any goog for me to dwell on this stuff. I will fight for Ashleigh until she tells me she is tired. I have many things going on right now that I just can't talk about here. Personal things that I have a very few friends and Howard that are helping me through. I do not do anything that any of you would not do. There is always someone else who has it worse than us. We are blessed to have Ashleigh with us, many parents sit with their arms empty, longing to hold their special angels. I had someone say that they wanted to nominate me for the Oprah Mother's Day special as a Hero of a mom. I am not a hero. I am a mom who loves her children more than life itself. Just like many of you.
I had several reason to close the website. Mainly, because we have had a few post that are anti-war related that I had to erase and I have a couple of friends watching out for them for me. I don't think Howard needs to hear peoples opinion on what people think of the war.. There was once a study after Vietnam, that said more soldiers were burned out and lost their desire to fight on because of the lack of support they received on the homefront. I do not want to break Howard's spirit down by reading this stuff. I also do not want Ashleigh's website to be taken over by a war debate. I also was afraid of the judgement that we would receive for looking into farther treatment for Ashleigh's quality of life. However, I also came to this conclusion...those who want to judge are going to no matter what we are doing, until they hold their dieing child everyday, they do not know what this is like and what they would do or how they would feel. There are many other reasons to close the site that I just can't get into right now.
After reading your emails, I can't close the site. It amazed me how many people are talking about Krabbe and the need for newborn screening. It amazed me how many people are praying for Ashleigh, Howard and our family. I want a mom to be able to find Ashleigh and fight her doctors to find out what is wrong with her child. I want someone to say, Ashleigh inspired them into a better life. I want to know that Ashleigh's suffering has a purpose. Everone says that everything happens for a reason and God doesn't give you anything you can't handle...well, if that is true...I need to find the purpose. I need to feel that when this soul leaves us, she accomplished her mission.
I ask this, if you see negative post, PLEASE do not post to them. Don't give them the attention they desire. I will have the post removed when I can.
Again, thank you so much for your encouraging words, your stories about how you found Ashleigh and how she has inspired you. Always remember Where there is life, there is HOPE and we will never give up HOPE.
I received a "poster" in the mail yesterday from a 19 year old college student, who did a dance fund raiser for children. On her poster was three pictures of Ashleigh and these words...
Ashleigh Ryann-
You are my hero, and there are so many things that I wish to tell you. Meeting you and your family changed my life in so many ways. I am a better person after meeting you. I only wish that there was something that I could do to make you healthy. Take away your pain for only a day, and watch you run free. You are my special angel. I know that you can't stay here forever because no on does. There is a special place for you in heaven where you will run free from the disease that stole your childhood. I am dancing these twenty-four hours for you Ash. I can't make you healthy, but I can make a difference in another child's life in your name. Thank you for making me a better person. I love you. -Erin
At the bottom it also has the words to a very special song to us...
They shine a little brighter, they feel a little more
They touch your life in ways no one has ever done before
They love a little stronger, they live to give their best
They make our lives so blessed, so why do they go so soon?
The ones with sould so beautiful
I heard someone say.
They must be borrowed angels, here in this life
They come along into this world and make this world bright
But they can't stay forever Cause they're heaven sent
And sometimes, heaved needs them back again
-Borrowed Anges by Kristin Chenoweth
Again, thank you so much for all your kind words, unconditional support and prayers.
Friday, February 9, 2007 3:16 PM CST
ASHLEIGH'S WEBSITE WILL BE LOCKED ON SUNDAY @ MIDNIGHT. IF YOU WANT THE PASSWORD, PLEASE EMAIL ME. I THINK WE HAVE COME TO A PLACE IN OUR JOURNEY, THAT WE NEED TO CLOSE THE CURTAIN FOR A WHILE. FOR OUR LONG TIME SUPPORTERS, YOU WILL ALWAYS BE WELCOME TO BE PART OF THIS INCREDIBLE JOURNEY WITH US.
I must say, I have been taken back by all the emails for the password and the encouraging words of support. Thank you so much for your unconditional support and prayers. We will soon need your prayers more than ever as we look at another treatment that may improve Ashleigh's quaility of life.
I will forward the email out to the email addresses that I have late Sunday night.
Last night I talked to Sue about the chicken pox issue at Mackenzie's school. We also talked about how great Ashleigh looks this week.
I called her this morning to tell her the "good" week is at an end. Ashleigh had a fever, increased secretions and low saturations. I took her to clinic blood work was done, along with cultures. Ashleigh's port is now re-accessed and she is on 5 days of antibiotics. We may have to change if something grows out from the cultures.
Ashleigh is much better now, not back to smiling and interacting. She is not requiring oxygen and suctioing anymore, temp is down and all other vitals are back to baseline.
We are having a "girls weekend". We are staying in and watching movies, having popcorn and doing alot of snuggling. I did want to get out to get Mackenzie the Flicka and Cinderella III movies, but since we had to go to clinic, I did not make it there. Maybe for Valentine's Day or something.
I must thank Colleen and Amanda, you have been so wonderful the last few weeks and I could not thank you enough for you help. Hopefully, things will be better soon.
Thursday, February 8, 2007 3:58 PM CST
As of midnight, Sunday night, Ashleigh's website will be password protected. If you would like the password, please email me.
moocow517@comcast.net or michelle.gwin@us.army.mil
Thank you for understanding.
I will update more later...
Okay, I am back. Very busy day!!
Ashleigh had all three therapies. She did great. She is still staying awake and smiling. This week has been great with her.
Mackenzie is doing well. The dentist had a patient cancel so we moved her surgery. I am nervous, kind of been on edge a bit.
Mackenzie came home with a note from school that they had a case of the chicken pox. I immediately called the school to find out if the child was from Mackenzie's class, thank God she/he is not. Ashleigh has some protection from it already through her IVIG. Sue is going to see if Dr. K wants to start Acyclovir, but she does not think so.
Communication with Howard has still been bad. I did get to talk to him a bit, but I could hear myself echo back. We have so much going on right now, that I feel like it is all business and we do not get good conversation in.
I went to get my hair cut today. I handed the lady my ATM card to pay and she handed me a paper...I went to sign and it said..."Happy Valentine's Day, Miss and Love You, Howard" in bold pink letters. He called ahead and paid for my day at the spa. It was a wonderful day that was very needed.
Every woman that worked there was saying how great he was and how sweet he is to call from Iraq and do that...I have to agree, he is great and sweet!
I have to head to the base to get my new military id card that includes the extension. I am want to see what they put as the end date. I am guessing November, I hope he is here for the girls birthdays. Mackenzie talked about him being gone for two of her birthdays last year. I can't imagine how upset she will be for 3...plus, I wanted to take a trip for their birthdays, since they are 3 days apart.
Okay, need to get the girls in bed and finish making chocolate lollipops...I should be up 1/2 the night playing in chocolate.
Oh, no news from Dr. Escolar...still waiting to hear about the Botox.
Wednesday, February 7, 2007 10:24 PM CST
Nothing to exciting to report tonight...
Ashleigh went for a bike ride today. She loves being outside. She holds her head up, eyes open and is so happy. We are hoping she can go out again tomorrow. She has been very happy, waking up with giggles and smiles. She is really tolerating the steroid wean well, although she did give me some attitude tonight for moving her into bed. The Lamictal has not increased her sleepiness. The nurse did laugh today because Ashleigh would not go to sleep unless all her braces were off (knee immobilizer and hand splints) and someone was holding her hand. Spoiled!
Mackenzie loved her chess club. She won 3 out of 5 games. She played against kids she didn't know and "two were even boys". She can't wait to go back next week...but she said we can play too. She has a playdate with one of her friends and we are going to have a couple of her girlfriends from school over for an ice cream social during spring break. She is excited.
Communication with Howard has been terrible, not much to tell you about him, except that we are still checking out houses online and we hope to take a trip when he gets back (of course that depends on Ashleigh).
Okay, I need to get done...Mackenzie has me making 100 chocolate lollipops for the 100 days of school on Friday. We did the same project last year but Mackenzie wanted to do the same thing, since "it is a different school".
Oh, Mackenzie told me today that she loves North Carolina...I was happy to hear her say it, she is starting to settle in and is comfortable with our move.
Tuesday, February 6, 2007 9:31 PM CST
Okay for all you Kurtzberg patients...we made record time at clinic!! We were in and out in 3 hours, with an infusion! Yes, we were out of clinic before NOON! I do think that should go into some kind of record book. Dr. Kurtzberg laughed.
Dr. K thought Ashleigh looked good. She does have some Graft vs Host on her face, but we are going to use Protopic to treat it unless it gets out of control.
Ashleigh's steroids have been switched over to Orapred, no more IV solu-medrol! Yeah, port is de-accessed and Ashleigh can get a real bath!
We increased her Lamictal, her level was on the low side and we are hoping to stop using extra Ativan to control the seizures. She is still going to have sub-clinical seizures that we will always be chasing, but we are hoping this will take care of the bigger ones.
We will discuss trying to feed her through her stomach in a couple more weeks. We need to get her off the steroids and back to baseline.
The doctor at Duke was less than happy about doing Botox in Ashleigh because of her neuro status. He thinks that putting her under every 3 months could be too hard on her, he does not think she would benefit from the injections because she could not help in the therapy part of the treatment! Well, he doesn't know Ashleigh! So, we will move to the next doctor, who comes highly recommended by Dr. Escolar. My concern is that he is an hour and a half away and if he does the casting will we have to travel there every week and if Ashleigh has problems with the sedation, we will be admitted to Wake Forest. They do not know Ashleigh or all of her many issues. I do have another transplant mom who said she will do travel there with me to help with Ashleigh on the ride back.
Mackenzie is excited to start Chess Club tomorrow. We have been playing at home...she is so much fun. I could not imagine this journey without Mackenzie to keep me grounded.
I have not heard from Howard in a bit...I think this is the longest we have gone without talking since he deployed. I did get an email from him saying the phone lines have been down that he would keep trying to call. He wanted to wish Mackenzie luck at chess club.
Thank you for the cheering session about the woman at Target. I now many of you have faced the same situation. As Mackenzie will say "HOOAH".
I did not stay for a response from the woman, I was too upset by her reaction to Ashleigh being 4 in size 5 diapers!
Ursula, thank you so much for your post. Remember "where there is life, there is HOPE" and our children always have HOPE! Sending you hugs and please know that I will be your cheerleader down here when Alexia is in her transplant.
"A person's a person, no matter how small" - Dr. Seuss
Monday, February 5, 2007 9:53 PM CST
Ashleigh had an amazing day. She was wide eyed and looking around, interacting and letting us all know what she did and did not want to do. It was great to see her like this. I love these days...she looked so beautiful.
We will see Dr. Kurtzberg tomorrow. Hopefully, we get the date for the botox injections. We will also discuss the sleeping episode, seizures and diet.
Mackenzie and I spent the night playing chess. She is so cute, so smart! She is very excited about chess club. We are getting her 100 days of school project together. How fun?!
I went to run a few errands this afternoon and they were not very successful. The bank gave me a hard time about cashing a check with Howard's name on it. The post office wouldn't take my packages without a return address on it and well Target was the icing on the cake. I was waiting for a Target employee to return with Ashleigh's diapers size five. A pregnant women with her 2-2 1/2 year old son was also waiting to ask the employee a question. The woman asked how old my "baby" was. I knew I would get a response from her so I just said "4". She made a face and said "well, maybe it is time to think about potty training". I started to turn away but that is not my strongest point, so I simply said "My daughter can't walk, talk, had a stem cell transplant and oh, is terminal, but if you would like to potty train her for me, that would be great". I was beyond mad. How dare that woman make a comment to a stranger about parenting? I guess she read in a book that size fives were taboo and thought she should tell me how bad of a parent I am because my 4 year old is wearing a size 5 diaper. Well, the American Academy of Pediatrics recommends....never mind, not worth getting into it.
Have a great night!
Saturday, February 3, 2007 9:53 PM CST
Very quick update...to tired to function.
Ashleigh finally woke up for the first time around noon, she slept on and off most of the day. We had a very long day, trying to figure out medication doses. She then had a couple hours of seizures on and off, again medications dosage was a big issue. We did not want to sedate her but needed to stop her from seizing.
Visited with a friend for a bit...sorry we didn't have more time to talk about our girls, but it was great seeing you. :-)
Mackenzie read the bed time book tonight, her reading has gotten so great. Mackenzie and Ashleigh are sleeping, heading to bed. If everything is okay with Ashleigh tomorrow, I am taking Mackenzie out to lunch and spending some time at her favorite store, Barnes and Noble. She loves to sit and read books. She starts chess club next week, so I need to get a chess set tomorrow for her to practice. They are our big plans for the day, again, they depend on Ashleigh. Hopefully, we are not spending another day at clinic!
Good night!
Friday, February 2, 2007 2:46 PM CST
1:00am Saturday
Ashleigh is now on 4 liters of oxygen. Dr. Kurtzberg had me give her 9mg of IV solu-medrol. It worked a little but her response was not as good as it usually is from steroids. We are holding on and staying home for now. She is so sleepy that we can't give her her full doses of Ativan, but there is a possiblity that this is all seizure related, so right now we are giving 1/2 doses of her regular scheduled amount. If I see anything that I suspect is seizure related (besides the sleeping, irregular heart rate and breathing that she is already having), meaning shaking, jerking or eye rolling than I have to take her in for Versed. It will be a long night with a ton of caffeine. Thank you Dawn and Shannon for your help. Please pray, gotta go...alarming
3:46pm Friday
It is almost 4:00 in the afternoon and Ashleigh is still not awake. We are not sure why, I did not see any seizures, but we know that she has sub-clinical seizures. I tried to wake her several times, her nurse has tried. We held her noon dose of Methadone and her 4:00 dose of Ativan. She has been on two liters of oxygen most of the day, her saturations were dropping into the 70's. She has only had one wet diaper all day. There really isn't anything we can do for her, we are just watching.
I hate days like this...I wish she would just declare herself so we know how to respond.
Please pray...
I packaged up Howard's Valentine and Birthday package...it will go out tomorrow. I got his extension orders today...they use to say not to exceed 608 days, which takes him to August...they now say not to exceed 730 days. I haven't counted out the time yet, but I think that is around October/November. Hopefully, that does not mean that is really how long they are keeping him!
Very tired today...
Thursday, February 1, 2007 8:04 AM CST
Another snow day for Mackenzie! There is a dusting of snow but it is also icing out. The funny part of it is half the schools closed before the first flake fell. Mackenzie was excited.
She does want to go to school tomorrow, it is spirit day. The children will dress in the favorite sports attire or school colors. Mackenzie decided she is wearing red, white and blue...her favorite team is TEAM AMERICA!
We have decided to do the botox injection. Now we are looking into which doctor to use. There is one at Duke that does it or the doctor who first started doing these injections is at Wake Forest in Winston Salem, about an hour and half away. Dr. Kurtzberg said it is up to us on where we want to go, she thinks they are both very good. Dr. Escolar likes the doctor at Wake better. We are going to talk with both doctors and see which plan would be better for Ashleigh. Our questions are simple. We want to know if they will do the serial casting and if they would use sedation. Different doctors do it different ways...
The reason the sedation may be better is because Ashleigh's clonis is very bad right now because of her being so tight. To give you an idea of how bad she is, even with therapy, massages, baclofen and knee imobilizers, her legs are so stiff they can no longer be straightened and I can barely open her legs to clean her during diapering. Dr. Kurtzberg pointed out that she may be uncomfortable from the injections for a little bit but she can not be comfortable with the way her legs are now. We are also concerned about her dislocated hip with her being so tight there is a chance they could have complication.
The singular is working very well so we may be able to come off the solu-medrol. Yeah! That is important for her bones also. The high doses of steroid can cause compression fractures. She has 5 in her back and one in her arm from 3 years ago, we have been lucky not to have any new ones but the steroids put her at high risk. We have not had a bone scan to check on her osteopenia.
Please pray for Alexia, she has relapsed and needs to get into remission for her to come back to Duke for a second transplant. www.caringbridge.org/southamerica/alexia
Tuesday, January 30, 2007 3:10 PM CST
12:10am Wednesday
I just emailed Dr. Kurtzberg a list of questions about the botox, and I talked to our Physical therapist, Jamie earlier in the night.
Jamie thought the botox injections were a great idea. She thinks Ashleigh has gained alot of strength in her upper body and agreed with me that we do not want to fall back.
I will talk to Howard about Jamie's opinion and the questions I asked Dr. Kurtzberg and her replies. As of now, I think this is something we are going to seriously consider. I would love to hear from anyone who has done the injections, both good and bad experiences. The more information we have the better...
Please check out the new pictures, our friend Edie did an incredible job putting them together! Also check out Ashleigh's other website www.ashleighryann.com . Edie is also putting together for me, however I am a big slacker and have not sent her pictures and Ashleigh's story! Slack that I am (funny inside joke with our nurse practitioner, Sue).
3:10pm, Tuesday
Another early day at clinic. I feel spoiled. Next week will be early too. Dr. Kurtzberg will only be at clinic for a bit next week because she leaves for the Bone Marrow Convention.
Ashleigh is doing well. We are going to wait to see if her seizure medications are at treatable levels. We took the blood today and it will take a few days to get the results. Dr. Kurtzberg said the option for Ashleigh's stiff legs would either be increasing the baclofen or botox injections. I am going to talk to Jamie (therapist) and talk to Howard about it. It is done in the operating room and Ashleigh will have to put to sleep for it. She most likely will need 3 injections in each leg and she would have to do it every three months. The reason this may be a better option is because Ashleigh is gaining strength in her trunk and neck, the baclofen will relax her whole body and we could loose what she has gained. Dr. Kurtzberg said it is completely up to us.
We also started Singular today. We are hoping that it will help with the secretions without the side effects of the steroids. We will try to wean the steroids next week after the Singular has time to work.
Mackenzie is having some oral surgery, nothing too major. Just nervous about her being put under. The skin that connects her lip to her gums is too long, that is going to be cut. Her two bottom front teeth are coming in crooked because the teeth on either side are not falling out, they will be pulled. She also needs a tooth capped. The other bad part is insurance is not covering the hospital charges!
Thank you for the supportive words for Howard. I am sorry, but I deleted them from the guessbook but kept them on my computer. We just do not want to open this up to anti-war/pro-war debate. We thank you for your support for not only Howard but all of our troops and although I agree with "mom of a fallen soldier", we can not have that here. This is about a little girl and her family, not the war. I would be more than happy to email privately about it. As Mackenzie says "HOOAH, it's an Army thing"!
Monday, January 29, 2007 11:12 PM CST
Once again, Ashleigh has us all sitting around scratching our heads, asking "how do we fix this?"
Ashleigh needs to have her baclofen increased. It was my idea. I do not like baclofen, but Ashleigh has been extremely stiff and she is on a very low dose.
However, Ashleigh has been sleeping for days. Today, she barely woke up. We can not increase the baclofen because of two reasons: 1. It can increase sleepiness, until her body adjust to it. 2. It can increase her risk of seizures.
Last week we increase one of Ashleigh's seizure drugs, Lamictal, which could cause increased sleepiness. However, it never did before.
Okay, the issues...we do not know if Ashleigh is sleeping because she is still having seizure activity that is not visible or because of Lamictal. We can not increase the baclofen because of the seizure activity and sleeping.
Also, since decreasing the solu-medrol, Asheligh has had increased secretions. I am not sure what we are going to do about it. She can not stay on such a high dose of steroids.
She also had some GvHD rash, which means we may have to go back on Dacluzamab. The good news is so far, protopic as worked to keep her from fully flaring up.
Okay, I think I explained that the best I could. Confusing huh?
Mackenzie is scheduled for her surgery the beginning of March. They are looking for a closer date, but so far that is the next available date.
Her fat lip is still hurting, so I can just imagine her after the surgery. Yikes.
Sunday, January 28, 2007 4:22 PM CST
NEW PICTURES!!
Thank you Edie for all your work on both websites.
Ashleigh is doing well, she is having some seizure issues but they are only small ones. We increased her limictal, so hopefully they will be better soon.
Everything else is going good with Ashleigh, weaning steroids, no antibiotics, no infections, negative culture for the RSV. Two more negatives and she will be off of contact isolation.
Mackenzie is good, she is very proud of her report card. We are going to celebrate next weekend with lunch and a movie!
Howard called, he sounds tired. He said he had some stuff going on there that he could not talk about, but he was okay.
I went to Donovan's funeral yesterday. It was a beautiful service. His big brother released orange balloons and we all put on orange ribbons. They had such wonderful pictures of him. Natural pictures that showed his wonderful smile and his incredible spirit.
I related alot of the service to what I would want to Ashleigh. I kept thinking that could be my daughter in that tiny coffin one day, I loved the readings and entire service. However, on the drive home, I just wanted to know WHY?
Why are children dieing? What can't we cure them? Why aren't we screening babies better at birth? They are our future, they are our dream, they are our HOPE.
God Bless all the children who suffer in this world.
Friday, January 26, 2007 6:21 AM CST
4:45pm
Quick update...Ashleigh went to clinic for blood cultures and blood work. Her counts were great. Sue gave her an antibiotic while we wait for the cultures. She had another fever...
Mackenzie got her report card! We are trying to figure out how we are going to celebrate. She is doing so great. I can not even begin to tell you how wonderful they are at her school, the children, teachers, staff, parents, everyone. This school has been a blessing. Another great bonus about our move to North Carolina!
6:21am
Ashleigh has had some problems with seizures the last few days. We have been using ativan to stop them, however, we have to be careful not to over sedate her. The plan is to continue to use the ativan unless it does not work, then we will have to go into the hospital for Versed (sp?). Again, it can only be given in the hospital because it could have serious side effect.
Ashleigh also had some problems with fevers, but they went away on there own. I was concerned because it went pretty high. Since it broke on it's own, we did not have to go in for cultures.
I think that is pretty much all that is going on. Oh, Ashleigh's teacher starts on Monday. Very excited!
Mackenzie's lip is bruised, she looks like she ate a grape popcycle. She is still upset by it...I can imagine how much she will play up her mouth after surgery.
Howard is doing well. We have been emailing a bit more, they are having phone problems because of storms. I still hear from him a couple times a week also. I am about to send him some packages for Valentines and his birthday.
Alot of visitors heading down...that is always fun.
Okay, that is all...need to get Mackenzie ready for school.
Wednesday, January 24, 2007 0:15 AM CST
Ashleigh had a wonderful week. Laughing, smiling, interacting, "singing", eating....busy and wonderful week!
On Sunday, Ashleigh coughed and fell over hitting some pillows. She laughed so hard, full belly laughing. It was great to see her so alert and happy.
I was singing her ABC's and she starting moving her mouth and moaning...she sang along with me.
Mackenzie told a silly story, Ashleigh thought it was so funny, she again, belly laughed.
Jenn, wonderful speech therapist, fed Ashleigh soy yogurt this week.
Ashleigh had the best week she has had in almost a year.
Last year, on the 27th is when she was admitted to the hospital up north and eventually air lifted down here on March 1st. Ashleigh has never fully balanced back. She has wonderful days, they just come in smaller doses, she is still having GI issues, seizure issues and many other problems.
Monday night Ashleigh's week changed from awesome to once again hard on her...
Around 5:30, she bagan fussing and crying. It last until 2 am. Not a Krabbe cry, not neuro at all. It was pain. I gave her (under semi-orders from Dr. Kurtzberg and Sue), 3 X's the regular amount of Methadone, 3 X's the regular amount of Ativan, 2 doses of tylenol and a dose of benedryl. Nothing worked. Finally, she fell asleep snuggled very tight to my chest. I took her to clinic...crying. She calmed down and had a couple hours of playing.
Laughing, smiling at our social worker and playing the 5 little monkeys.
We left clinic at 12:30...for all you Dr. K patients, YES, 12:30!! We had an okay afternoon, then it all started again. Ashleigh cried. I called Sue, she said to give her one extra dose of Ativan. Didn't work. She then said, maybe I should come in but Ashleigh's seemed a little better. Ashleigh then had some seizures, arms and legs were jerking, lasting somewhere around an hour. Then more crying. We were given a choice of either sedating her at home a little or taking her into clinic to get an IV dose of a medication that can not be done at home. I chose to stay home. Then Ashleigh's eyes starting shaking...more seizures. I called Sue back, but clinic was closing, so we would have to go inpatient for the medications.
The medication can not be done at home because you give a little wait to see if they respond, if not, you give more. However, Sue said it has to be given under a control enviroment because it could over sedate and cause severe breathing issues.
I decided to wait to see if I could stop them at home.
Sue called on her way home to check in (she is so good to us), Ashleigh is sleeping. We were both happy. If we have any problems...we can try Ativan one time, if that doesn't work, we have to go in for the medication.
I was talking to Melissa, Angel Donovan's mom, she has been doing Pharm sales for years and has a connection for Howard to talk to about a job down here. I was excited. I also talked to the social worker about insurance...she thinks, the insurance company of company with over 50 employees is not allowed to consider Ashleigh a pre-exsisting condition according to HIPPA. She gave me the name and number of Dr. Kurtzberg's insurance specialist to get more information about HIPPA and also look into Medicaid for Ashleigh. Tri-Care has been wonderful to us, but we have a few medications that are not covered by insurance and I want to prepare for when Howard comes off of orders.
I will update on Ashleigh's seizures/crying when we know more. I think we for now we are going to look at her pancreas and do some x-rays...looking for the compression fractures.
Today, is Mackenzie and Ashleigh's pop-pop's birthday. Happy Birthday Pop-pop!!
Mackenzie fell at school today during PE (gym class). She split her lip and now has a fat lip. She has not stopped talking about it and she looks so cute with it.
Okay, I need to see about some sleep. I really would love to have normal sleeping habits!
Saturday, January 20, 2007
God received a special angel tonight. Our friend Donovan flew to heaven, where he is free from pain, medications, tubes and cancer. God Bless you little buddy.
Ashleigh is doing very well. She is sleeping.
Carolyn, can you send me the picture of Ashleigh in her yellow dress? I am curious about which one it is.
Mackenzie is doing great. Yes, she is horseback riding. However, she might stop for the rest of the winter. She said it is too cold. She is going to go to horse summer camp. She also joined the chess team and jump roping. I am also talking to another mom about piano lessons. Mackenzie has also asked about swimming. She loves to have activities after school. They are good to keep her mind off of the things going on with Ashleigh and Howard being away.
They are calling for more bad weather...
Thursday, January 18, 2007 6:22 AM CST
NO SCHOOL!! SNOW DAY!!
Mackenzie is sad, I didn't get snow boots and clothes. Didn't think we would need them in North Carolina! I don't even think they sell that stuff here.
We were warned the the RSV can flare up and cause issues for a bit. Last night, Ashleigh had a difficult night. Labored breathing, a ton of secretions and blueish skin. I sat over her with her suction and cleared her out. She spiked a fever, but we didn't have to take her in for cultures because the fever broke without tylenol. Most likely it is caused by Krabbe.
I am reading a book about helping brain injured children and a great therapy program for Ashleigh. I am going to talk about it with Drs. Kurtzberg and Escolar and see if they feel it would help Ashleigh. Ashleigh is also enrolled in "school". She will have a teacher come out to work with Ashleigh in our home. We are very excited about it! Ashleigh has proved she is in there and we are going to find a way for her to come out.
Thank you Colleen for your message, your right, Ashleigh will never be in a position where she is ignored and she will be included in every conversation that is suitable for her. Of course, there will always be a room for you in our new house!
Jerri, I am so excited for your exciting news. Just remind Jim that Wilmington, North Carolina is a huge boating area. I know you talked about moving there before, and now it will only be 2 hours from me!! Yeah!!
Howard called from Iraq. He finally got there. He said the travel was tiring. He said the spirits of the guys are a bit down because of the new orders. A bit frustrated with the delay in his promotion, it is a good raise in pay that we could really use right now.
Please pray for our buddy Donovan. www.caringbridge.org/in/babydonovan
Tuesday, January 16, 2007 3:43 PM CST
Early day at clinic today...a lot of information!
First Dr. Kurtzberg was extremely pleased with how Ashleigh looked. She said she didn't looking like a kid recovering from RSV. She wants us to start pushing harder in therapy. She thinks Ashleigh has alot of potential that we need to work out of her. Just simple things like talking and reading to her will do wonders for her brain, just like every other child.
Ashleigh received IVIG today, but we held the Dacluzamab until we see what Ashleigh is going to do. She hasn't had it in a month and so far we do not have any GvHD issues. Cross your fingers!! Dr. Kurtzberg did say that it could be because of all the steroids she is on right now and we weaned them a little today. As we wean them, we may start seeing some GvHD...hopefully not.
We talked about traveling and we agreed that the fall/winter is not the best time for Ashleigh to travel or be around people.
The last time I talked to Howard was yesterday, he was still not in Iraq! He is tired from all the traveling and waiting around. He wants to rejoin his men and complete their mission. Hopefully, he will call tonight.
Mackenzie had a great time at her friend's slumber party. She is still talking about it. They are a wonderful family and Mackenzie really loved playing with the little girl. Of course, she has told me way too many times that the mom is going to have a baby soon!
My military email is not working right. If you have emailed me, I can not reply back to you. It just shows me the email, but I can't replay or forward it. Erin, you are more than welcome, let me know what dates you are looking at. Colleen - miss you, can't wait to see you and Amanda.
Saturday, January 13, 2007 6:50 PM CST
Mackenzie is at her first slumber party. She has grown so fast.
Ashleigh is laying on the couch with Charlotte snuggled next to her. Ashleigh is doing so much better. It is amazing. She had a slight fever today, but her blood cultures are negative, so we just watched it. It came down on it's own. She has been awake, looking around. Clinic on Tuesday...
Howard left yesterday around noon. He called last night night, he was stuck in Atlanta. He called this afternoon...yup, still in Atlanta. It was a full day we could have had together. When he came home we thought his mission would be over in the March or April time frame. When he left Friday, we knew he had been extended and he will not be home until sometime at the end of the summer.
The apartment is quiet tonight, I don't think that I realized a few things until Howard was home. I didn't know I was so tired. I didn't realize how lonely I am. I didn't know how wonderful being together as a family was going to be and I absolutely did not know how hard it would be to be here without him. Saying good-bye this time was much harder than the other times.
On a good note, we went looking at houses, we found two that we love. It will all be put on hold. Hopefully, by next Christmas we are all together, in our new house, as a family, together.
Wednesday, January 10, 2007 8:08 PM CST
Okay...Good news...we are home!
Ashleigh was released from the hospital this afternoon. She is on a antibiotic and IV steroids...she is off of oxygen and hardly requiring suctioning! Her x-ray is better, her behavior is better...she looks great! The doctors did warn us that she could go back and forth for the next week or two. She is still on contact isolation, so we do not pass it around.
It is amazing that Ashleigh can be so sick and turn around so fast. It happens all the time, but the doctors also said it was common for the virus. WE talked about PICU too many times this past week, thank God we did not have to go visit them.
The military has been very kind to us, Howard's commanders have been more than supportive of our family situation. The gave Howard two more days, he will now leave Friday.
I will try to post pictures of Ashleigh soon, I have a ton to show you all...Christmas, a crazy new year's eve and a scary week in the hospital.
I also wanted to thank all the nurses, doctors and staff of 5200. You make staying inpatient a vacation! You are all awesome!
Monday, January 8, 2007 4:29 PM CST
I am not sure where to begin...
We went to New Jersey the day after Christmas, Ashleigh had a tough time. I think it will be a very long time before we consider traveling with her again.
Saturday (12/30) we headed home to North Carolina. Ashleigh slept most of the way, she woke up when we were in North Carolina and her coloring was off. I called Sue and we drove directly to clinic. Ashleigh's lungs were very tight and she was not moving air very well. We gave her two breathing treatments, took some blood cultures and gave her an antibiotic.
Sunday (New Years Eve), we went back to clinic for follow up care. Ashleigh recieved more breathing treatments and we headed home. The four of us celebrated New Years Eve together. We had a great time just being together.
Monday, we stayed home and watched football, ate all of Howard's favorite foods.
Around 10:30, I emailed Dr. Kurtzberg to tell her Ashleigh's face was swollen. She told me to only give her half her feed and keep an eye on her.
At 2am, I gave Ashleigh 10mg of steroids and two breathing treatments. She settled down and we went to sleep.
On Tuesday, at 9:05, Ashleigh and I arrived at clinic. I walked through the hall, with Ashleigh and my arms. One of the nurses said "Good Morning"...my response was "not breathing well". They put us in a room, three nurses came in and worked on Ashleigh. Her saturation was 64. I am not sure what her other vitals were. The nurses worked on her for 10 minutes. Sue came in and called Rapid Response. They came to evaluate Ashleigh. They put in a nasal trumpet to open Ashleigh's airway. We talked about her DNR and moving her to intensive care. Dr. Kurtzberg came in and said that Ashleigh should be able to go to the bone marrow unit. Dr. Kurtzberg came back a little later and said Ashleigh tested positive for RSV. Ashleigh had to be admitted to the bone marrow unit.
Wednesday, Thursday, Friday all seem to run together...
One of the days, Ashleigh was placed on HeliOx (spelling?). It is helium and oxygen together. The purpose is for the helium to push the oxygen farther into the lungs. One of the days, they tried to remove the nasal trumpet, Ashleigh was bleeding a bit. She started having some saturation problems so they had to place the nasal trumpet back in. Ashleigh had good moments and extremely bad times. On one of those days, the Rapid Response team was called over. They evaluated her and ordered some more test. They returned two more times that day, just to check on her. Seeing the Rapid Reponse team four times in one week, is more than I ever wanted to do.
Saturday and Sunday, Ashleigh did well. We were very happy, thinking we are going to be discharged.
Early, this morning (monday) Ashleigh started to have some more problems and requiring more oxygen. A chest x-ray and blood gas was ordered. Ashleigh's lungs are cloudy and her CO2 was high again. They started Ashleigh on two antibiotics to treat her for bacteria infections in the lungs. The concern will be can she fight two infections at the same time.
She is in desperate need of prayers. Please storm heaven's gate with prayer for Ashleigh.
The military gave Howard an extra 5 days for Ashleigh. The problem now, is with two infections, she is not in good shape and he is leaving Wednesday. I am also trying to figure out what to do with Mackenzie.
Please Pray.
Thursday, December 21, 2006 7:01 AM CST
Yesterday morning Howard called to tell me that he may be able to get a earlier flight...very excited!
A woman at the airport asked him to follow her to the ticket counter. She told them that she would like to give up her seat and take a later flight so Howard could get home to his family. What a beautiful woman!!
Sadly, Delta is one of the few airlines that would not allow this. Some airlines will ask people to do it for soldiers returning home. Southwest has even given free tickets to people who give up their seats for soldiers. Delta would not do anything, so Howard sat at the airport for two hours and missed Mackenzie's Christmas concert/service at school.
After the concert/service, Mackenzie and I headed to the airport. We got there just in time for his plane to land. We went in and met him just inside.
Mackenzie snuggled to me a minute as he was coming down the steps, then went to him as soon as he got to us. We hugged. The whole area was full of soldiers from different units coming home for the holidays. We headed home.
Howard said it was weird to see our things in the apartment. We always had furnished apartments and our things were in New Jersey.
Howard held Ashleigh. Her eyes were wide open. She just looked at him. He talked to her and she just kept her eyes wide open. He told her he was not on the phone that she could feel him. I think she was so amazed to see him.
Howard and Mackenzie went to get our tree. We were together as a family for the first time in 9 months. It was awesome!
All soldiers receive two weeks leave, while they are deployed. Soldier get to pick when it will be. Some take it during the time their wives are having babies, during the summer vacation to be with their children, or at various times. When Howard told me he wanted to wait until Christmas (if that time slot was available) or the girls birthdays (November), I was not happy. It was so far away. I didn't want to wait that long. Well, he was thinking better than I was because I am so happy that he is here for Christmas. Please remember all the families who are without their loved ones with year and for the soldiers who will continue their work during the holidays. We are blessed to be able to celebrate as we wish...please remember those who live in a country were they do not have the privledge to do that. Happy Holidays and Thank you to our troops who give us that freedom.
Medically, Ashleigh seems a little better. She has had a couple of the episodes, they do not seem as bad and they are not lasting as long. Hopefully this means, it is infection related and we are clearing it.
We have clinic tomorrow, infusion (due next week but we are doing it early because of Christmas).
Dr. Kurtzberg wants us to see a pulmonologist and she is talking to a new neurologist. The neuro comes highly recommended. He is interested in working within Dr. K's program and leukodystrophies. We have never seen different doctors down here. Dr. K said it may just be her consulting with them. We need to find a medication to control Ashleigh's seizures. She had a nine minute seizure the other night.
Okay, going to make breakfast for my family! Yeah, that sounds great!!
Tuesday, December 19, 2006 11:17 PM CST
Ashleigh was in and out of clinic in an 3 1/2 hours...even with a 2 hour infusion. Dr. Kurtzberg is covering 5200 so we had another doctor. As nice as it was to get out so fast however, we didn't do much for Ashleigh's care.
We did not wean medications, we did not really do much.
Sue called after we got home to tell me that the resistance came back on Ashleigh's airway infection. Apparently, we were over treating the infection so we switched to a lower antibiotic. A oral antibiotic!! Yeah!!
We are going to see if Ashleigh's stomach can handle it, hopefully we can.
We came home from clinic and then went to lunch and did some Christmas shopping with Kelly. It was nice to get out. We did not go into very crowded places and stayed out of the big mall. With cold and flu season and that is the last thing Ashleigh needs.
Mackenzie had a great playdate! She had so much fun with her friend from school. She has an assembly at school tomorrow. She is very excited and told me that she has been working very hard on her songs.
HOWARD SHOULD BE HERE IN JUST HOURS!!! I update after he gets here to tell you about my girls reaction.
Saturday, December 16, 2006 8:50 AM CST
I just got an email from Dr. Kurtzberg, she looked at Ashleigh's x-rays and CAT scans. She ruled out adenoids and tonsils being the cause of the breathing episodes.
Once we clear the infection from her airway, if Ashleigh continues to do it, we will be left with a diagnoses of floppy airway caused by low muscle tone. We will not be able to do anything about it, except help Ashleigh through the episodes.
We will not go in-patient, for we know it is not a feeding issue. We will not do any other test for now, only cultures to see if we are clearing the infection
I have to go...I promised Mackenzie the computer at 10:00.
I will write more later.
Friday, December 15, 2006 5:25 PM CST
I wish I could explain the day I had, but I will spare you all the details and skip right to Ashleigh....which, as you
know can keep us on our toes.
Still no word from Dr.K on what changes we are going to make to Ashleigh's seizures medications. She is looking into some adult seizure medications that may help her.
This morning, I tried to access Ashleigh's port and couldn't get it. I talked to Sue and she said to bring her in after therapy. Not a big deal...right? No, it was. The thought was that the port flipped upside down...which means...Dr. Kurtzberg can try to flip it back with her hand or she would have to go to surgery. Her port is tilted, hopefully we can get it to the right place without surgery.
During therapy, Ashleigh started having alot of breathing problems and struggling. Her sats were dropping to the high 60's and her heart rate went to 178. White foam started coming out of her mouth. She was having the episodes that I have been seeing at night.
I got her to clinic and Sue called in Dr. Martin. Ashleigh was in distress. Everyone was wonderful. They moved quick and stablized her, without calling the first response team.
Whatever is causing these issues are not seizure related or feed related, today when it happened she was not feeding.
Dr. Martin thinks that most likely this is airway related and Ashleigh is loosing tone in her airway, closing off her ability to breath. Meaning Krabbe is...
Ashleigh did test positive for several infections in her airway, one has been identified as Staph. They are trying to check to see if it has become resistant to antibiotics.
Ashleigh is starting Zyvox IV for now, we may have to change it later.
Mackenzie recieved a wonderful gift in the mail today, a Vermont Teddy Bear, dressed as an equestian. She loved it. Thank you Steve and the entire Wildwood Elks club for your continued support of our family.
Howard will be home very soon!! I will post pictures of him with the girls as soon I can.
I will update more later, I am extremely tired and need to clean still.
Thank you all for everything, especially your prayers for our sweet Ashleigh!
Wednesday, December 13, 2006 3:30 PM CST
I am using someone elses computer. I don't think I have been home for 10 minutes in the last few days!
Ashleigh's EEG was read, while they were taking the leads off of her. I wish I had better news...
First the episodes that she is having are not seizure related. The times that I pushed the button on the EEG, did not show seizure activity. Which means...we will most likely be going in patient to check things out. We are out of ideas...we will look for more digestive issues but if we can not find it, we most likely have to accept that her Krabbe damage is becoming more of an issue.
The other thing is that during the 48 hours that Ashleigh was on the EEG, she did have 15 seizures...lasting about 45 seconds each. We will be looking for more medication options and making some pretty big changes over the next few weeks. Hopefully, she does not get over sedated from them...she does sometimes while making changes.
On a good note...which I was not going to share yet but we are making some changes to Ashleigh's daily schedule.
Ashleigh's wonderful speech therapist, Jen talked to Sue yesterday about Ashleigh's progress...Sue and I then talked to Dr. Kurtzberg and she was very impressed by what the speech therapist had reported so we are going to start pushing harder for Ashleigh to communicate. Okay, I know you are all wondering what this report had in it so here we go...
Ashleigh can look at 2-3 cards and pick out objects from them...example...If Jenn holds up a picture of an apple, hat and shoe...and ask Ashleigh to look at the hat..she will look at the hat. She is accurate about 70-90 percent of the time! Dr. Kurtzberg was thrilled and thought told us alot about Ashleigh's ability to process her surroundings. We are going to meet with Dr. Kurtzberg and Dr. Escolar after the holidays and start moving forward some care. Jenn is going to start working with yes and no questions with a switch (she can answer yes and no by blinking her eyes and looking at pictures) and communication devices...hoping to move on to a computer.
Jenn has been so wonderful working with Ashleigh. She has never looked at her as she will never do something...she just works with Ashleigh and is very patient to wait for Ashleigh's answers.
Okay, that is all I can explain for now....I will update again when things settle down! Howard will be home SOON!!
Monday, December 11, 2006 11:37 AM CST
Ashleigh had her EEG placed this morning. The EEG lab said if she does the episode tonight, we can remove it tomorrow, but Dr. Kurtzberg said she wants the full 48 hours.
We are also looking at dates to have Ashleigh admitted for observation. We need to do it when there is a bed available on 5200 and when Howard is home so he can stay with Mackenzie. Hopefully, it is just a quick overnight stay and Howard's whole leave is not spent in the hospital.
We are hoping to go to New Jersey the day after Christmas for a couple of days. Today, after talking to Sue, Ashleigh is due for two of her big infusions the day after Christmas, so we need to see if we can do the infusion before Christmas. Sue is going to check with Dr. Kurtzberg about it because they are timed drugs...IVIG and Dacluzimab.
Our count down is on for Howard to come home...we are so excited. Mackenzie has been non stop talking about all the things she wants to do with her daddy.
Tomorrow we will see Dr. Kurtzberg. I will draw her counts, chemistries and drug levels (zonegran, lamictal and caffeine). Hopefully, everthing is in a therapuetic level and we will not make medication changes to them. I am hoping she will allow us to wean the orapred. I really would love to get Ashleigh off of the steroids. Ashleighis also due to two infusions, Dacluzimab and Synegist (sp?)I took great pictures and a small video of the episodes to show Dr. Kurtzberg....Busy day tomorrow!!
Okay, I will update after our visit tomorrow, hopefully we will get some good news.
Saturday, December 9, 2006 10:11 PM CST
Ashleigh is scheduled for her EEG on Monday. If all goes well she will have it taken off on Wednesday and we should have the results either that night or Thursday morning.
If we do not see any of the episodes she will have it put back on Friday, taken off on Monday. Her hair will be a mess, falling out and full of glue. I cancelled Mackenzie and Ashleigh's Christmas pictures. Ashleigh will be a mess and I would rather wait until her hair is back to normal.
Ashleigh is pouring with secretions during her feeds. Her heart rate is 180-190, Sats are in the low 80's. I took a video to show Dr. Kurtzberg. I just don't think I can explain how bad these episodes are clearly for her to understand how terrible Ashleigh looks.
Plan B will to go into the hospital during the time that Dr. Kurtzberg is covering the unit, which is the week before Christmas and the week of. We will go in for one night, hoping that Ashleigh will react to her feeds and we can send her right for a CT scan. If we do have to go with plan B, we will wait until Howard is home and he and Mackenzie can have a special night. Hopefully, it will only be one night...
I am tired, frustrated and emotionally drained. As odd as this may sound, seizure may be the best case senario. Please pray that this is not nerve damage causing digestive failure.
Tuesday, December 5, 2006 10:01 PM CST
Long day at clinic...
I really have to think about the visit, too much to process at this moment.
Dr. Kurtzberg thinks Ashleigh is have seizure and that is what is causing the problems not the feeds. We are going to to a 48 hour EEG, however we will keep it on for as long as it takes to capture these episodes that she is having.
I can't say if I agree completely with Dr. K. I do think she is having issues with her seizures, however, I do not think that is what I am seeing when I feed her. That is the part of the visit that I need to process.
Nothing else happened...we disagreed about the feeding and that is really all we talked about.
I have a question for you all, not one that I really expect an answer...I am reading a book and it brought up interesting questions. Would you have a child genetic made up to match another child who was terminal...giving birth to that child so you could use different things to help the sick child? First the cord blood for transplant, then white cells, then bone marrow, then a kidney...
My question to you all, (again, not one that needs an answer but if you would like to answer it please feel free to email me, address at bottom of page) How far are willing to go to save your dieing child?
The book has given me a vision of my life...the bond we form with our medical team, the struggles that we have gone through, the choices we have made, the sacrifces that Howard, Mackenzie and I have made, the friends that we lost. The book talks about the medications that we use...the chemo, Narcan, Ativan, Morphin and the list goes on. It talks about transplant and the people that travel it with us...next to us. It has captured me and made me realize what life has become for us.
I am sure I will be talking about the book more...
Good Night.
Monday, December 4, 2006 6:14 PM CST
It has been a tough few days...
Ashleigh is not tolerating her feeds, we do not know why. Everytime I feed her, her little body wretches, gags, foam comes from her mouth and nose. Her saturations drop to the 70's and her heart rate shoots up to the 180's.
She has not woken up for more than a few minutes for the last two days. Her eye lids are also puffy. She has one wet diaper a day...the list can go on...
She is not doing well...I hate these days for her. They are just hard to watch, her struggling to breathe, knowing she must be hungry...I am too sad for her.
Saturday, she had a wonderful morning, we even went out in public...well to a lunch with some two of Mackenzie's teachers and two bone marrow nurses. I had a very nice time and Ashleigh was awake looking around, she really did well.
Sunday was all about the pity party. It was our 12th wedding anniversary. Howard and I have not been together to celebrate our last three. Our 10th, I was in North Carolina, our 11th he was in Mississippi and this year he is in Iraq. Howard sent me a vase carved by an Iraqi wood worker and flowers with a beautiful card. I think it has been such an emotional roller coaster with Ashleigh and our friends, that I did not do well yesterday.
My sweet Mackenzie made me breakfast, toast with a 1/2 lb. of butter on it, a bottle of water and some great snuggles.
Ashleigh slept the day away, I snuggled with her, just to smell her breathe. I love it.
Mackenzie's class won an ice cream party at school for collecting box tops. She was excited. Tomorrow she is playing with her friend Anna after school. She can't wait. She has such wonderful school friends, I could not be happier with this school. They have been terrific to us.
Ashleigh and I will have another long day at clinic, we are going to feed her to try to cause her to go into distress. Gosh, does this sound like the same plan as we had a few months ago...I feel like it is an endless circle. I fear that is it the beginning of Ashleigh's body rejecting food...
Thank you for all your prayers for Ashleigh and our family. Please keep our dear friend, Donovan in your prayers also. www.caringbridge.org/in/babydonovan
As terrible as I am feeling, I try to remember that there are others who have things worse.
Thursday, November 30, 2006 4:05 PM CST
I wrote a very long update last night, but I lost it. I will try to remember all the things I wanted to tell you.
Yesterday, Ashleigh was extremely sleepy. I talked to Sue and we held a dose of Methadone and only gave 1/2 of her regular dose of Ativan. Around midnight, she started having some problems with her feed. I turned it off, suctioned her and when she was settled and back to sleep, I started it again. Sadly, it did not work. Ashleigh only received 321ml of her normal 600 feed.
I talked to Sue, this morning, we gave her some feed at a very low rate and watched her. Her eyes and nose were slightly puffy. It did not make sense why she would get puffy when she is not getting enough fluid.
Ashleigh had an exciting therapy day. She had speech and physical therapies. She did great, she sure does love her bike rides. Ashleigh has some new therapy today...a massage. Megan, did gave Ashleigh a massage and taught me a few things that can help Ashleigh stay relaxed.
Mackenzie has a little cold. She is stuffed up a bit, watery eyes, popping ears. She didn't ride today, it was about to storm. Otherwise, she is doing well. Busy social calendar...Sarah's on Tuesday, Heather's on Saturday and Anna's on Tuesday!! She has been asking for Howard alot. I can't imagine when he has to leave again.
Speaking (or writing) of Howard, I talked to him yesterday. He sound tired but excited to come home. I think part of him just wants to relax and the other part wants to go out and have fun with the girls.
Last nights' update had the story of our thanksgiving.
My friend Colleen and her daughter, Amanda came down from Pennsylvania to visit. It rained most of the week. We did manage to go to Duke Gardens but most of the time, we just hung out at the apartment. Mackenzie and Amanda had a blast playing.
I met Colleen, when Ashleigh and Amanda were receiving therapy at the same time. We became instant friends. She is wonderful to me and I am so grateful to have her for a friend. We laugh (alot) together. I know I can go to her for anything and she would always be there to support me, without judgement. I can laugh, cry or vent to her and she will be there. I could never thank Colleen enough for how wonderful she is.
Her daughter, Amanda, had open heart surgery over the summer and came through it with flying colors! Yeah!! Amanda, also can not talk. She can hear, she plays, runs and acts like every other 5 year old, except she can't talk. Colleen has fought endlessly for Amanda's right for a school that can better help her. Amanda and Mackenzie are great friends. Amanda is even teaching Mackenzie how to do sign language. www.caringbridge.org/visit/amandaconatymoser
Our other guess that day was Jewels, Ashleigh nurse. She worked and then stayed with us for dinner. She made a pie that everyone raved about.
We also had Melissa and her son, Donovan over. Melisaa is so sweet and supportive to all the families. She is alot of fun to hang out and chat with.
Her son, Donovan, was diagnosed with Leukemia at 4 WEEKS old. He has had chemo, radiation and two cord blood transplants. Donovan thought it was the greatest thing to show me his booboo on his arm and laugh at my response.
Sadly, Tuesday at clinic. Melissa was told that Donovan has relapsed, his transplant failed. Due to his extensive treatments and his very aggressive leukemia, there is not any treatment options available for Donovan. I plead with you to send your prayers for Donovan. He is an amazing little boy and if anyone can beat this then he can do it. NO ONE is giving up on Donovan, remember, where there is life, there is HOPE and HOPE is the one thing all of our children have. Please pray for Melissa, Darren, Dylan and sweet Donovan. www.caringbridge.org/in/babydonovan
I love being here, I feel like this is the beginning of the rest of our lives. As much as I love it, it is also hard to be at Duke. Duke is a beautiful place, full of HOPE, cures, support and love. However, it is also a very difficult place, children come here from all over the world because they have a terminal disease. No one is here for the common cold. The families become close to each other and the staff. Children struggle, fight for their lives and sometimes, they do not make it. Each time it hurts everyone who walks the halls of 5200 and the 4th floor of the clinic.
A very special family once said that death lurks the halls here, looking for it's soul to steal. As parents we hold on tight to our children and pray that it is not our child's soul that it is looking for.
Hug your children tighter. God bless our angels.
Wednesday, November 29, 2006 1:37 AM CST
We had a long but good clinic visit! We got to clinic at 9 am and got home a 7pm...but it was busy! Ashleigh got IVIG, Dacluzimab, Cipro for her infusions. Jen (speech) came and fed Ashleigh a milk shake made of Rice Dream (non dairy ice cream), formula and strawberry syrup. Ashleigh loved it, closed her mouth around the spoon and didn't spit much of it out. She did great. We are going to start feeding her more by mouth. Dr. Kurtzberg wants us to try non-dairy yogurt, because of the antibiotics Ashleigh takes she would like us to give Ashleigh the bacteria that is in yogurt to help prevent c-diff and other problems that may occur.
Ashleigh's urine culture shows the same bacteria that she had last month, so we are trying a new antibiotic (ceftin). The good part is that it is oral and we do not have to run an IV. Her port is not even accessed.
Dr. Kurtzberg thinks the feeding may be related to infections. So we are going to treat them and see if she tolerates her feeds better. If she does not, we will have to go back up on steroids and start looking for a cause. She also had some leakage around her GJ tube that could have been blood so we are watching that. Sue thought it might be a bit tender in the tissue around the tube, not the stomach itself. It could also just be some medications that leaked out.
Overall, Dr. K was pleased with the way Ashleigh looked, she was not overly concerned about the feeding YET.
We talked about Mackenzie a bit, Charlotte (cat) and Howard coming home, reviewing our plans for when he is home. She made a couple of great suggestions on things we can do as a family, a nice place for the two of us to go for dinner.
On another note...I can not find my cell phone (thought it was in my diaper bag, but it must be in my truck) and I have been going to bed at 8pm with Mackenzie and getting up at 2am, Ashleigh sleeping pattern right now has been a little rough. Amanda, I am so sorry, I did not get to talk to you before Noah's surgery later this morning. I will try to reach you tomorrow afternoon. I feel terrible we did not get to talk more about Kaitlyn's surgery last week. Hopefully things will slow down for both us of and we can catch up.
We have a very busy week this week...even our weekend will be busy. Cat has a vet appointment, extra blood draws for Ashleigh, going to a brunch on Saturday with some ladies from Mackenzie's school and nurses (they go to the same church). I can't even think of what else...hopefully whatever else is going on does not include clinic this weekend.
Renee - it is so encouraging that Nettie didn't start eating until 9 years old. Thank you for sharing that. I gives me hope that Ashleigh will one day eat for nourishment and not just for taste!! As for the reflux, we will test for it, if we do not see improvement with the antibiotics. You know the test...ph probes, scans, stomach emptying...I would like to avoid them. However, reflux is a better choice than graft vs host (although her skin has been beautiful since starting the new immune suppressent).
Okay starting to babble...going back to bed! As strange as this may seem, I do feel like I am getting more rest this way!
I told Howard, when he gets home from "vacation", I am going to relax and kick my feet up. I also said I am watching football every weekend. I think it was something like..."I am sitting on the couch, flipping from one game to the next, eating wings and drinking beer"...okay none of it was true. He thought I lost my mind! I don't even like football!! I do look at the score of the Giants game for him, but most of the time he already knows it by the time we talk anyway. His communications have gotten worse lately! All I have to say is SOON! He will be home SOON!
Sunday, November 26, 2006 4:12 PM CST
ANOTHER QUICK UPDATE... 11/28/06 2:12AM
I got a call from clinic tonight, Ashleigh blood culture has not shown anything, but her urine has gram-neg rods again. They have to grow out the bacteria still, but they are starting her on IV Cipro. Hopefully, she will feel better soon and start eating again. Dr. K said that things affect Ashleigh differently and if one part of her is not feeling well, then it can cause her to have issues in many different places. Hopefully, the urine is causing her to have all the other issues. We are going to culture her secretions also, to make sure we are not missing something else. Mainly, because of her history of serious airway infections.
Ashleigh has not tolerated her feeds in a few days and TPN is not an option for us right now. We may have to give her some D-5 tomorrow to make up some of the fluid intake. I guess, we will see what her kidney functions are doing, if they look dry we will give fluids. She is also getting her IV Cipro, IVIG and dacluzimab (suppress the immune system). Dacluzimab, is in the family of ATG, but it targets the b-cells. For Ashleigh, we use it to prevent graft vs host disease.
It will be a very long day. We are going to try to feed her by mouth! Yeah!! Her home therapist is coming to clinic to feed her. She is very positive about Ashleigh and feels that Ashleigh can eat soft, thickened food. So, tomorrow we will try!! She also has Ashleigh making choices of what she wants to play with and making small sounds with her mouth. Jenn has been a great addition to Ashleigh's care.
Jamie took Ashleigh for a bike ride today. As usual, Ashleigh loved it. She really enjoys being outside. Thank God the weather has been better for her. We take her out whenever we can. I am looking for a jogging stroller or new wheels for her wheelchair so we can take her to Duke Gardens...she will love going there again. Her wheelchair does not go through there very well...the paths are too rough.
We are going to have a very long day at clinic...many issues to figure out, the biggest being her lack of ability to eat again. As of now, we are not super concerned with the infection...we will see what the bacteria it is.
I hate that we took a week off for Thanksgiving, I don't think Ashleigh is ready to miss her clinic visits. I feel like we were getting back on track and now she is falling apart again. I wish we would have gone in to have her looked over, maybe I missed something. Sue and Dr. K were not there this past week (they are both back tomorrow), thank God Sue will be at clinic during the two weeks that Dr. K will be covering the unit during Christmas. Plus, if we need her, we can just run up there to see her.
Okay, I am babbling so I better go back to bed. I took a 4 hour nap tonight when I put Mackenzie and Ashleigh to bed, so now I am wired!
Oh, one more thing...we got a new member to our family...Mackenzie got an adult cat for her birthday. Dr. K said we could have a cat but no kittens because of Ashleigh's immune system. We rescued her from PetSmart. Her name is Charlotte. She is very sweet and patient with Mackenzie. She acts like a dog, comes when she is called, follows you around...
Dr. Kurtzberg and Dr. Escolar both thought it would good for Mackenzie to have a focus that was hers. Mackenzie feeds/waters and scoops the litter, she is taking care of her all by herself. It helps her not to worry about Ashleigh so much. I will post a picture of her when I can. Tonight at bedtime, Mackenzie had a huge meltdown about Howard. I was reading her a book and she said it reminded her of him because he always reads that book to her. She just wanted to know why he had to go. I did the best I could to explain why he went and that he loved her and our country very much and wants it to be a safe place for her and Ashleigh to grow up. She said she did not like daddy's boss, I thought to myself, that 1/2 the country feels the same way. I told her that we need to support him, our soldiers and what they are doing...it is a special gift to have the freedoms we do and we can only thank those who are willing to serve our country (in the past, currently or in the future). We snuggled and talked about him, all the funny things he does, all the things we are going to do when we see him, who gets to kiss him first, then all three of us fell asleep.
Renee--Ashleigh just had a new g-j tube placed two weeks ago. Her nissen is in place. We have not seen any issues with reflux in a long time. Hopefully, she is not having any new issues with it. She takes prilosec to help with reflux and baclofen to help with the nissen. GI also thought since the GJ was in place that she wouldn't be able to reflux up to her stomach. (we were concerned about her backing up into her stomach causing her lipase to go up and causing her to cramp) Thank you for the suggestion, I will ask about the chances of reflux tomorrow. Please let me know how the PH probe goes...sending you all hugs.
**Please pray for Ashleigh to be able to eat. We are very concerned about her feeds again.** Also, all our many friends who are having problems now...especially for Levi's aspiration to show him making cells!**
--yes, my dear friend, crying is always good...it helps to find yourself, when you feel lost. Tonight is one of those nights... Love and hugs to you!!
Okay, done babbling...Good Night!!
Quick update...I will update more later...
We just got back from clinic. I was going to draw blood and send it with another family, but I didn't have any port needles here so we went in. Good thing we did, Ashleigh's white count is elevated and we did blood and urine cultures. Her urine is very cloudy, so I am sure something is in there again. Her neutrophils were also up, lymphocytes were low.
I was concerned because she is loosing her ability to tolerate her feeds again. She has these episodes at night (about five hours into her feed) where she is retching and coughing, full of secretions and crying. They have stopped if I give her a 1/2 hour break during her feed, but the last two nights it did not stop. I emailed Dr.K (who is on vacation, yes she does do that once and a while) and we added an extra dose of baclofen. It did not work and last night was the worse. She was still having some trouble this morning with coughing and retching, slightly elevated body temp, low saturations, high heart rate and a little bit of a high blood pressure.
We did drew blood, did blood cultures and urine cultures. We will most likely do a chest x-ray and secretion cultures monday or tuesday.
GOOD NEWS...Ashleigh lipase is down to to 707 (normal is 28-208). I know that doesn't look good but she was way over a thousand in the past and we are feeding her now!!
Okay, more later...I do need to tell you about our wonderful Thanksgiving and my friend Colleen and her daughter Amanda's visit!!
Below is a poem, it is for our military.
Different Christmas Poem
The embers glowed softly, and in their dim light,
I gazed round the room and I cherished the sight.
My wife was asleep, her head on my chest,
My daughter beside me, angelic in rest.
Outside the snow fell, a blanket of white,
Transforming the yard to a winter delight.
The sparkling lights in the tree I believe,
Completed the magic that was Christmas Eve.
My eyelids were heavy, my breathing was deep,
Secure and surrounded by love I would sleep.
In perfect contentment, or so it would seem,
So I slumbered, perhaps I started to dream.
The sound wasn't loud, and it wasn't too near,
But I opened my eyes when it tickled my ear.
Perhaps just a cough, I didn't quite know, Then the
sure sound of footsteps outside in the snow.
My soul gave a tremble, I struggled to hear,
And I crept to the door just to see who was near.
Standing out in the cold and the dark of the night,
A lone figure stood, his face weary and tight.
A soldier, I puzzled, some twenty years old,
Perhaps a Marine, huddled here in the cold.
Alone in the dark, he looked up and smiled,
Standing watch over me, and my wife and my child.
"What are you doing?" I asked without fear,
"Come in this moment, it's freezing out here!
Put down your pack, brush the snow from your sleeve,
You should be at home on a cold Christmas Eve!"
For barely a moment I saw his eyes shift,
Away from the cold and the snow blown in drifts..
To the window that danced with a warm fire's light
Then he sighed and he said "Its really all right,
I'm out here by choice. I'm here every night."
"It's my duty to stand at the front of the line,
That separates you from the darkest of times.
No one had to ask or beg or implore me,
I'm proud to stand here like my fathers before me.
My Gramps died at 'Pearl on a day in December,"
Then he sighed, "That's a Christmas 'Gram always remembers."
My dad stood his watch in the jungles of 'Nam',
And now it is my turn and so, here I am.
I've not seen my own son in more than a while,
But my wife sends me pictures, he's sure got her smile.
Then he bent and he carefully pulled from his bag,
The red, white, and blue... an American flag.
I can live through the cold and the being alone,
Away from my family, my house and my home.
I can stand at my post through the rain and the sleet,
I can sleep in a foxhole with little to eat.
I can carry the weight of killing another,
Or lay down my life with my sister and brother..
Who stand at the front against any and all,
To ensure for all time that this flag will not fall."
"So go back inside," he said, "harbor no fright,
Your family is waiting and I'll be all right."
"But isn't there something I can do, at the least,
"Give you money," I asked, "or prepare you a feast?
It seems all too little for all that you've done,
For being away from your wife and your son."
Then his eye welled a tear that held no regret,
"Just tell us you love us, and never forget.
To fight for our rights back at home while we're gone,
To stand your own watch, no matter how long.
For when we come home, either standing or dead,
To know you remember we fought and we bled.
Is payment enough, and with that we will trust,
That we mattered to you as you mattered to us."
Sunday, November 19, 2006 11:12 PM CST
Ashleigh turned four years old on Wednesday. Sorry for not updating earlier, but this was a hard birthday for me. Howard not being with us, made is hard. Plus, for a bit I was convinced that this was going to be Ashleigh's last birthday with me. After meeting with Dr. Kurtzberg, I feel alot better about that. I will explain more about my meeting with Dr. K in a minute.
We celebrated Ashleigh's birthday in clinic on Tuesday. We had lunch and cake. The nurses decorated her room for us, so when we arrived they had "Ashleigh's room" ready for the birthday girl. It was great. We really are lucky to have such great people looking out for her. Everyone signed a birthday banner for her. We will treasure it always.
It was hard to celebrate such a special day without Howard, he called and talked to Ashleigh but I wish he could have seen her.
Mackenzie celebrated her seventh birthday yesterday. We had a party at a horse farm. She had a blast. They fed animals and rode horses. Very Mackenzie type of party. I can't believe she is seven already, yet to have a converation with her, you might think she is an adult at times. She is way beyond her years. A little while ago, she woke up and diagnosed herself with the flu. I think she just had some reflux. She had me take her temp, and decided it wasn't high enough for the flu.
She had a wonderful time at the Kristoff's. Her and Katie are so wonderful together. I got to hear all about the great time she had with her best friend. I only hope next time, Ashleigh is well enough to travel and we can all go.
Okay the big meeting...
We spent about 2 1/2 to 3 hours talking about everything. Dr. K recommended a therapist for Mackenzie. She suggested a few things to try with her and gave me a book to read. She thinks that the issues that Mackenzie is having (talking fresh to me and not listening, giving certain grown ups a hard time, yet respecting others) is more related to moving down here and Howard being gone than Ashleigh. Ashleigh hasn't changed. Mackenzie knows Ashleigh the way she is....if anything, we are in patient less and things are more stable at home for Mackenzie as far as Ashleigh is concerned.
We talked about me, Howard, moving, tv shows...
We talked about future treatments and were we want to fit in and were she recommends us being. I have to admit I was surprised by that conversation, but pleased by the choices we were given and the one we made.
They did make a referral for Ashleigh to have hospice. Not because we think Ashleigh is going to die soon. More for the benefits that they can give Mackenzie as a sibling, equipment that they can provide Ashleigh and the security they can give incase something does happen in our home. As it is now, if Ashleigh were to die in our home (say she has a massive seizure) there would be a police investigation and she would have an autopy from the county. Having hospice would protect our rights and Ashleigh's dignity. After we set everything up with hospice, if something were to happen, she would be taken to Duke for Dr. Kurtzberg, then to the funeral directors.
Again, this is not because we are seeing something that makes us think that it will be soon.
Dr. Kurtzberg is actually very pleased with Ashleigh. I know things have been rough lately, but as far as her MRI, nerve conduction and other post transplant studies, Ashleigh is very stable with her disease. She has had either stable or improved test results since transplant.
The issues she is having now are not related to the disease and we are pleased with Ashleigh's progress in her therapies.
Her very awesome speech therapist has Ashleigh making choices and asking for certain toys. We are also getting ready to have a yes and no switch. Something that was recommended to us two years ago and we were never able to get it. Her PT has Ashleigh out for her bike rides and moving. Dr. K commented at our meeting how much Ashleigh has been moving, responding and making sounds. Ashleigh has been making pottery, painting and playing with fake snow.
Ashleigh has been doing much better. They think the issues she was having with her face was caused by an allergy to something in TPN. We are now on full strength feeds overnight and tolerating them great. It is great to feed her. She is off of antibiotics for the first time in who knows how long, her central line is gone and her port is only accessed for blood draws right now. We are getting back on track.
Don't get me wrong, there are still a ton of issues, but she has made such great gains over the past two weeks that I am very excited and feeling better about where Ashleigh is. We are still fighting secretions and still on steroids.
I need to go do ORAL medications, no IV's !!! I will try to be better about updating...it has been an emotional year and I am sure it is better for me not to express some of those feelings!
Thank you for the continued prayers and well wishes. Thank you to those of you who posted for Ashleigh and Mackenzie's birthdays! Your messages mean the world to us.
God Bless.
Tuesday, November 7, 2006 11:03 PM CST
Ashleigh performed well at clinic today, her oxygen dropped into the 40's and took a bit to get her back up. Four nurses and Sue came in. While Sue was examining her, Dr. Kurtzberg came in. Ashleigh straightened herself out, but it was enough to buy us an extra couple of hours of "observation".
Dr. Kurtzberg said Ashleigh's CT scan does not show signs of a stroke, but she could have Bell's Palsy. An injury to the 7th cranial nerve, causing the side of her face to be paralized. It is temporary, and will heal. It is not serious but it can come back. Most likely, when Ashleigh's right side of face was swollen, it caused pressure on the nerve, causing trauma.
We weaned a few of Ashleigh medications, Zonegran (level was too high), methadone (dropped a full dose), Ativan (lowered two of her three doses). We kept her IV antibiotics and steroids the same.
I meet with Dr. Kurtzberg on Thursday night, at 6:30. I am very nervous and excited about the meeting. We have alot to go over, some good, some bad. Sue is coming in on her day off to join us. Sue is so wonderful to us. I would be lost without her.
Madison Gerber earned her wings today, please stop by her site and learn about her stuggle and offer suport to her family. www.caringbridge.org/visit/madison05
Monday, November 6, 2006 8:30 PM CST
Ashleigh had a pretty good day. She was awake more and even went for a bike ride during physical therapy. Jamie loves taking Ashleigh outside. There is such a difference in Ashleigh's behavior. She also made some pottery in speech therapy. For Christmas last year, Ashleigh got a pottery wheel that was adapted for Ashleigh to use with a switch. She made paper weights. She had her eyes open the whole time moving her hands. She really liked the texture.
Mackenzie's surgery was post-poned until after the new year. Our medical insurance won't cover the hospital charges and I would have to pay $6000 before they would take her. However, as of January 1st, the insurance will cover the hospital charges...so we will go to surgery on the 10th of January. Does that make sense?
I need to pack and get ready for a Dr. Kurtzberg clinic day, I am still not sure when we are having our sit down meeting with her...either Wednesday or Thrusday. We are only having a clinic appointment tomorrow, which is medical issues with Ashleigh that are not as long term. For example, I am concerned about ther G-J tube leaking, I am worried she is loosing her medications through it. Questions about the right side of her face. Why she is sleeping so much, is it seizure related. Checking her skin for graft vs host.
My sit down meeting will be about long term treatment for Ashleigh, hospice, prognosis, another experimental treatment that Dr. Kurtzberg is working on. Ashleigh was scheduled to be in the second round of treatment, but a few weeks ago after talking to Dr. K, we decided to have her moved to the first stage of the treatment. It will be a much more serious talk, without interuptions, without Ashleigh. I am sure there will be many tissues needed.
Sunday, November 5, 2006 6:59 PM CST
Ashleigh had yet another difficult day. I am convinced that she will pull through this and we will have our Ashleigh back soon.
Today, she slept all day, barely waking up at all. When she did it was only to be suctioned and then she would go back out.
She is still not using her right side of her face still. The did not see any signs of a stroke on her test. That is one of my questions for Dr. K this week.
Please keep Ashleigh and all the children here in your prayers. It has been a difficult week here with many children having difficulties, some earning their wings.
Saturday, November 4, 2006 10:25 AM CST
NEW PICTURES!!
Nothing going on with Ashleigh...I am meeting with Dr. Kurtzberg in the office next week, to talk about future treatments and hospice.
Sadly, Blake Haines has earned his wings...please pray for his incredible family during this most difficult time. Blake was an inspiration to many, as he fought a hard battle.
www.caringbridge.org/visit/blakehaines
Thursday, November 2, 2006 7:21 PM CST
Ashleigh has been very junky for two days. She was requiring oxygen for a bit last night. We will consider doing cultures if the secretions continue to be an issue.
Sadly, that is not the worse of our issues. We can handle secretions...we can not handle the facial issues. Ashleigh's right side of her face was a bit larger today, after 6 days of no issues. She did not turn colors and we did not see any other side effects. I am extremely upset by this, now we need to keep looking for the cause, praying it is not Krabbe. The other problem is that when Ashleigh smiles, she is not moving the right side of her face. The same side that has been giving us issues. I told Sue, she asked if her cheek was drooping (I am guessing to see if it was possibly a stroke), but it is not.
We are still looking for a time for the meeting with Dr. K. I told Sue if we needed to make it at night time, that would be fine...hopefully we get to sit down with her soon to see if we can figure this out and find a way to treat it.
Again, please pray this is not Krabbe....
Please keep Blake Haines in your prayers...he is having an extremely difficult time on 5200. www.caringbridge.org/visit/blakehaines
As much as I love being here, it is a place of much hope, but it also has it's pain. Every family is here because their child was diagnosed with a terminal illness...too many children dieing from diseases that range from cancer, leukemia, metabolics, leukodystrophies, immune failure and many more. Just the past week or so, , two children relapsed, their cancer so bad that they can not be treated anymore, one died, another had his family called in and new families just arriving to find out if they can put their child through this treatment because it is their last chance of hope. Then there are children who leave here cured, walking, talking and as if they just weathered a storm and the sky is now calm. I love being here, yet the reality of it is so difficult to take sometimes. The reality that children die and my child may be one of them...I just would like to know WHY?
Thank you so much for your continued support and prayers.
Wednesday, November 1, 2006 2:19 PM CST
Clinic was not too terrible. I thought it would be a long day but it was okay.
Jamie (Ashleigh's PT) picked Mackenzie up at clinic and took her to a Halloween party and trick or treating. Mackenzie had a blast! She got way too much candy!! Her costume was Felicity Merriman, the American Girl doll. Mackenzie loves her and was asking everyone if they were patriot (wanted their freedom from the King of England) or if they were loyalist (loyal to the King). Mackenzie (Felicity) was a patriot.
Ashleigh was the Little Mermaid. Her dress was puffy and big. She had a tiara on! She looked wonderful. I wanted to make her a witch but I couldn't find a cute enough costume. Of course, I was looking this weekend, when everything was picked over. I just figured a witch costume would explain her recent issues!
Dr. Kurtzberg thinks that Ashleigh developed an allergy to her TPN! Yeah!! It is most likely not related to disease!! She is doing so much better. We have not had any issues since last week. I think we are out of the woods this time. We are meeting with Dr. Kurtzberg about the end of life and other issues. She said we have a great deal to talk about, but she does not believe Ashleigh is in immediate danger! I will not be meeting with her until next week, but I will let you know when I do. I recieved Dr. Escolar's report on Ashleigh's visit, she was very positive and we will be seeing her everything 3-6 months. She was very impressed with Ashleigh's interaction with us. She recommended some switches for Ashleigh to use during therapy and she would also like for Ashleigh to see the orthopedic surgeon.
Howard and I are planning a trip to Brooklyn during Christmas (as long as Ashleigh behaves), we are meeting with some friends at a restaurant, if anyone is in the area is interested in joining us, please email me!
Howard has a countdown to come home for his leave. I can't wait to see him. Ashleigh will be so happy, he always makes her smile! Mackenzie...I think I might have to pry her off of him!!
Friday, October 27, 2006 11:29 PM CDT
Once again, I am not sure where to begin...
Last Saturday, Ashleigh's face was swallen and very pale. I talked to Sue and we were concerned about extra fluid being on board. An hour later, I called clinic to tell them I was on my way and Ashleigh was purple. When I arrived, they took Ashleigh into a room and within minutes they pulled a "Code Blue". After 45 minutes of working on her Ashleigh recovered. She was NOT placed on a vent. Actually, we went home later that night. She had an ultrasound and x-ray...Dr. Martin thought she had a blood clot in the vein that had her central venus line, it tested negative.
Sunday, Ashleigh had a pretty good day, considering what happened the day before. She smiled when she talked to her daddy on the phone and was awake most of the day.
I honestly, do not remember Monday. I wish I did but I think I have lost a few days...mentally. Oh, I think we went for a CAT scan of her neck, head and chest. It did not show us anything we did not already know
Tuesday, we were at clinic, needless to say...we were there ALL day. I talked to Dr. Kurtzberg about what else could be causing the facial issues...we came up with this...there could still be a partial clot, the line is causing problems because it has a sheath over it, an infection and it is slightly out of the vein and in the small vessel. She could have developed an allergy to something in her TPN or a medication. The third option is that it could be disease causing the veins to dilate and contract. If this is the case, there will not be anything we can do for Ashleigh.
Wednesday, was an okay...nothing impressive.
Thursday, Ashleigh was once again in very bad shape. We got to clinic, which they prepared for a code which (Thank God) she did not do. Sue was very concerned about Ashleigh color. We went for an EEG, to make sure this was not being caused by large seizures. Once again, we did not see anything. Dr. Kurtzberg came over to clinic and we discussed our options...I picked option one. We pulled the central venus line out of Ashleigh's chest in clinic. This is usually done in surgery, but Ashleigh is not stable enough to go into the Operating Room. I must say, this was the worse thing I have ever seen done to Ashleigh...Dr. Kurtzberg wrapped the line around her hand and started to gently pull. I held Ashleigh's shirt up and put pressure on the chest where the line was. Then Dr. K pulled harder, after a few minutes of working the line, she pulled the whole thing out. There was not much blood, but something about made me sick. I had to sit and put my head to my knees. As much as I have done and seen done to Ashleigh and pulling the line was the thing to get to me. Sue said it was most likely more emotions then anything.
Sadly, that was not the answer. Ashleigh's face once again, reacted to something. So we took the TPN away from her. Sadly, again, her face is very large and red.
Next week, I will be meeting with Dr. Kurtzberg about what we will do for Ashleigh, what else could be causing these issues and if there is anything we can do for her. We will also be talking about our wishes for Ashleigh in the event of another "code" and her death. We have been looking into another treatment for Ashleigh that could possibly help her. The problem is Dr. Kurtzberg is waiting for FDA approval to start human studies. When we first talked to Dr.K, 3 years ago, about this...Ashleigh was to be in the second round of human studies. With the issues that Ashleigh is having we have decided to move Ashleigh into the first round of treatment. We will once again discuss this treatment for Ashleigh next week.
I am sorry I have not been updating but Ashleigh has been keeping me busy and very emotional. I will update more later...
Sunday, October 15, 2006 9:02 AM CDT
One again, I don't know where to begin. Ashleigh has so many issues going on but first I have a few other things to fill you in on...
Yesterday was 1 year that Howard started his mission. He went to Mississippi to start his training.
Mackenzie is doing great in horseback riding. Check out the new pictures of Mackenzie on her horse Edward.
Now Ashleigh...so much has happened and I hope this doesn't sound crazy and sll over the place.
Ashleigh has been on oxygen for most of the past week. She is at times junky, but most of the time she is clear. She is not waking up. We started her on caffine on tuesday, but it has not touched her. We are not sure why, Dr. K thinks her cortisol level may be low because we took her off of the solumedrol. She is now on hydrocortisone and orapred. Two steroids to try to make up for it. Her blood and stool cultures are all negative. She is having servere apnea during her non responsive times. Heart rate has been anywhere from the 60 to the 180. Her oxygen has been basically staying in the 80's even with the oxygen on up to 2.5 liters. We even got the ambu bag out, just in case. Dr. K asked me if I wanted her inpatient, but I said no. She agreed that they can't do anything different and Ashleigh is better off outpatient.
I have to go for now, I will finish updating later...
sorry for not having a complete story updated yet.
Please storm heaven with a ton of prayers...
Saturday, September 30, 2006 7:06 PM CDT
Mackenzie is talking to her best friend Katie Kristoff. They are talking about their siblings...Mackenzie is telling Katie that Ashleigh is doing better, "she is having some seizures", "she still can't eat, she is still on TPN", but "she is doing better than she was", "you know Ashleigh she is a stinker butt". It is amazing how they can relate to each other. They do have an incredible bond with each other.
We are planning on a surprise visit for Mackenzie and Katie. It will be wonderful for them. Mackenzie just asked Katie "How is your mother doing", "your father". "My dad, I am not sure about, he is Iraq, I think he is okay"
Ashleigh is having a okay day. She has had some oxygen requirements. She is awake more. Just not herself. I talked to Dr. Kurtzberg today, we agreed that Ashleigh has not bounced back since she got sick in January. I asked her a bunch of questions about Ashleigh's care and her plan. We also talked about other things for Ashleigh. We are going to go in more detail next week. I will update you after our talk.
We went to a birthday party for another transplant childs' brother. It was so cute. Mackenzie was shy at first, but when we were ready to leave, she was more comfortable. It was "weird" seeing the new families going through this. So much hope and fear...
Good night.
Friday, September 29, 2006 3:57 PM CDT
Can you believe it is almost October?! I love this time of year.
Ashleigh's week was somewhat better than it has been. Her hemoglobin is slowly going down. It was 8.7 today, she most likely will need a transfusion by Tuesday. I am hoping she can hold off until Tuesday. I figure since we have to be at clinic anyway on Tuesday, it wouldn't be bad getting a 3 hour infusion. Her other infusion on Tuesday is only a 1/2 hour, then we wait to see Dr. Kurtzberg. Since she was not in clinic this past week, next tuesday will be busy.
Ashleigh ate on and off this week. We did not change anything, just feeding as she will tolerate it.
Ashleigh also had some break though seizures, she is a bit sleepy from them. The good part is that they did not affect her vitals. Blood pressure, heart rate, oxygen and body temp. all were stable. She has been very sleepy
Mackenzie is having trouble adjusting to her new horse back riding school. In New Jersey her school had ponies, this school has all horses. They are extremely big and she is afraid of being up that high. She loves the horse she is riding, she loves caring for it, she just don't like being that high up. So yesterday, after riding, she said she will "pray to God for courage to ride big horses".
Howard is doing well, he has a count down on when he will be home. I can't give detail, just that it is before Christmas. Honestly I don't even know exact dates, he can't release them for security reason.
I am going to request a meeting with Dr. Kurtzberg to review some of Ashleigh's care and go over the plan. These meetings usually happen in her office, not in clinic because they last over an hour so we don't want to hold up clinic that long. I just have too many questions right now.
Dr. Escolar emailed me the information to start Ashliegh in Hippotherapy. I am hoping to hear from them soon. After reading their website, I am not sure if this will be an option for Ashleigh. When she gets her lines out she can go back in the pool. We can't wait. Dr. Escolar is also going to talk to Dr. Fitch and Dr. Kurtzberg about getting Ashleigh back up in her stander. She has not been in the stander because of her hips. Since we are not going to have them surgically repaired we are going to try a harness in the stander.
Okay, I have to go start TPN and night medications...
Wednesday, September 27, 2006 10:03 PM CDT
Yesterday at clinic, we tried to cause Ashleigh to have breathing problems...of course, Ashleigh did not want to perform. She did have some slight issues, but not what I have been seeing at home.
We did a small bowel follow through today. Again, we did not find anything. When they first started putting the dye in, the intestines moved it very slow. Then it picked up and her digestive system it "normal structure and function".
It was a very draining day. We were really hoping to find what is causing Ashleigh's issues.
I will write more later. I had a terrible week and I am drained.
Sorry...
Sunday, September 24, 2006 10:27 PM CDT
Change in plans...
We are going to feed Ashleigh in clinic this week instead of waiting for Dr. Kurtzberg to return. Ashleigh had some problems with her feed tonight, heart rate increased, oxygen went down, secretions increased...she ended up on oxygen again.
I sent Dr. K an email with the subject saying "Ashleigh Gwin - Round 2"...tomorrow will be round 3 and Tuesday we are going to feed her in clinic to try to get her to have this reaction. When she does we are going to xray her during the episode. Dr. Kurtzberg thinks there may be a blockage that is causing the breathing problems.
I will update you when I know more...
Sunday, September 24, 2006 8:39 AM CDT
Ashleigh has had some pretty good days. We started feeding her on Thursday. Four hours a day!
Last night, day three, she started to have some trouble. Not as bad as last Saturday. I emailed back and forth with Dr. Kurtzberg a bit. It started near the end of the feed, so she finished the feed and then it cleared up. We will see if it does it again tonight. Mainly, heart rate, oxygen, and secretion issues. She did not appear to be in pain...meaning she was not pulling her legs up. Her heart rate could have been pain.
Ashleigh had some great therapy sessions this week. She loves to give her therapist attitude. Miss Jenn (Speech) thinks we should make Ashleigh a little witch for halloween. Of course, a sparkle, fancy, pretty witch!
She was giving Miss Jenn a hard time with what toys to play with. I love it!
Mackenzie started horseback riding. She was a little nervous, because they are horses and not ponies. She did not like being that high up. We will see if it works out, otherwise I will have to find a new school that has ponies.
Mackenzie is going on a class trip tomorrow. I am going with her. We are going to explore trees and nature, have a picnic lunch. When we get back, I have parent teacher meeting to talk about Mackenzie! I am sure I will have a great update tomorrow night.
Tuesday should be a fast day at clinic. Dr. Kurtzberg is in Washington D.C. and we will be seeing one of the other transplant doctors. Ashleigh will have to get her weekly infusion, but it will only take a 1/2 hour! I am thinking we should be home by noon.
Okay, enough babbling! I will update soon.
Tuesday, September 19, 2006 5:34 AM CDT
Being Tuesday, this will be a quick update and I will add to it after we see Dr. Kurtzberg.
Ashleigh has had good and bad days. We still can't feed her. We tried this past week. Her lipase went up and she started to cramp. Saturday, Ashleigh was on her feed and was having a difficult time. I took her off the feed and took her to clinic. She was doing better. Later, the night I hooked her back up and within 15 minutes Ashleigh started having a hard time. She filled up with secretions, was breathing heavy, oxygen dropped to 88 nd her heart rate went up to 177. I took her off the feed, called Sue and we cleared her up. We also decided that the feeds were not going to work, we are not going to try to feed Ashleigh. Today we will talk to Dr. Kurtzberg about our next step. I believe our choices are wait 4-6 months (until the FK506 is completely out of her system)and try to feed her again or we may take her to surgery to look for what this could be. We have already done CT Scans, Ultrasounds, scopes and biopsies, x-rays, blood work and the G-J tube. We can not find the problem and we can't find a way to fix it. Ashleigh can stay on TPN for as long as her body will allow it, we are closely watching her liver very closely.
Ashleigh's hemoglobin also dropped, she may need a blood transfusion today. We think that whatever is going on with the pancreas is also what is causing the blood to drop. Maybe a slow internal bleed in her gut somewhere. Nothing to be concerned about.
We made it home to New Jersey this past weekend. Howard's mom flew in Friday morning and drove back with me Friday afternoon. Saturday my friend Colleen and her daughter Amanda ( caringbridge.org/visit/amandaconatymoser ) came over. Well, they didn't leave until Sunday night. We had such a great time. Just relaxing, talking and enjoying some wine. Mackenzie was so happy to have her friend, Amanda. They swam, played and went for ice cream with momm-mom and pop-pop. We always have such a great time with Colleen and Amanda. I really would be lost without Colleen. She keeps me stable!!
Monday we went to the Tom Laffy Annual Golf Outing. This year it was held for our family. We had a great time. I really can't explain what a wonderful family the Laffy's are. I know their parents are looking down from heaven with big smiles on their face and bragging about their children. We met Casey Duffy, a super special woman. We sadly missed Michele Nutter, she was unable to make it. The soldiers from the 5K run were there. I tried to give a speech but it was too emotional so my wonderful friend Collen finished it for me. Ashleigh enjoyed the fresh air. I really don't know how to tell you all how wonderful it was.
Monday night, Howard's mom drove back with me to North Carolina. She then flew home early Tuesday morning. She is another person I would be lost without. It was a hard day for her to do all that traveling and she didn't complain once...but she did get to spend the weekend with Mackenzie and Ashleigh! She was happy!!
Mackenzie is doing great at school. The staff and families at her school are just so wonderful. They have been great. I had breakfast with one of her teacher yesterday. I am so proud of Mackenzie, her kindness to her friends...she is amazing.
Mackenzie is also starting horseback riding on Thrusday. She is so excited. We do have to go get her new riding pants and boots...she is growing!
Howard has his countdown going. 90 plus days until he is home for Christmas. I can't wait until he is hear. He is going to be shocked by how big his girls are getting.
Okay...need to get ready for clinic and Mackenzie off to school. I will update later...promise!
Oh, here is my speech from the golf outing...
I would like to begin today, by thanking you all for your kindness to my family. The Laffy family, Keeping the Faith Foundation, and the New Jersey Army National Guard Officer Candidate Class for your support, the awareness that you have brought to Krabbe Disease and your never ending prayers for Ashleigh and our family. Words could never express our appreciation.
Ashleigh has endured more than what most of have in our adult lives. Many people ask the same questions about Ashleigh, so I thought I would answer some of those questions for all of you.
Ashleigh was born showing all signs of a healthy girl. She hit all her milestones on time and was doing wonderful. At 4 months old, she became irritable and seemed a little lazy. By 6 months, it was extremely concerning and she was admitted to A.I DuPont Hospital for Children in Wilmington, De. When Ashleigh was 6 months 29 days old, we were told Ashleigh had Krabbe Disease, a genetic neurodegenerative disease that affects the covering of the nerves, destroying the central and peripheral nervous system. Ashleigh would die by the age of two.
Our doctors informed us of an experimental treatment being done at Duke University in Durham, North Carolina. Using high doses of chemotherapy to kill the recipient’s cell and replace them with stem cells from a healthy baby’s cord blood, much like a bone marrow transplant. After meeting with the director of the Pediatric Stem Cell Transplant Program, Dr. Joanne Kurtzberg, and much debate, Howard and I decided to transplant Ashleigh. This is was not an easy choice for us. Many people have asked how we came to this decision. Within a few days of receiving all of the information it became clear, we had no other choice. Krabbes Disease guaranteed Ashleigh a tortuous life before an inevitable death. Transplant would give Ashleigh a 40hance of survival.
Now, I would like to tell you a story about a little girl named Madison. Wendy and Chad Tierney lost their daughter, Grace to Krabbes Disease. Because of Grace, Wendy and Chad had Madison Faith tested at birth, she too was positive for Krabbe. Madison was transplanted at 26 days old. Today, Madison is a healthy 2 year old, who enjoys somersaults, the beach and the zoo. Madison will continue to grow and thrive because of the opportunity she was given through newborn screening.
Krabbe Disease is not tested for unless there is a family history. Since Ashleigh was not tested at birth, her disease caused too much damage to her body. She will be in a wheelchair until she dies. Yes, Ashleigh is still terminal. We gave Ashleigh the best quality of life we could for the short time that we will be blessed with her.
As of August 1st , 2006, the state of New York expanded their newborn screening program to include Krabbe Disease. The first in the country. Kentucky will soon follow.
I ask this, why are we sending a message that our childrens lives are more valuable by what state they are born in. Why Mississippi only test for 3 disease and Hawaii is testing for 46? New Jersey incase you are wondering test for 28 disease.
Ashleigh Ryann, You shine a little brighter and we feel a little more. You have touched our lives in ways no one has ever done before. We love a little stronger and you live to give your best because of you my beautiful girl, our lives have been so blessed. You are our borrowed angel, who came into our lives, and because of you I stand here before all these wonderful people, trying to make this world right. We know that you cannot stay forever but our world is a little richer just because you came along. You have taught us more in your three years ten months than some people learn in a lifetime. You are our strength and our hero. Thank you Ashleigh for coming into our lives and showing us the true meaning of Love and Hope.
Many people have asked Howard and I , If we had known what was going to happen to Ashleigh, would we have choose to do something different. Our response is always the same. We simply quote Garth Brooks... could have missed the pain, but we would have had to miss the dance. And we wouldn’t have missed Ashleigh’s life for anything in the world. So I say to you all
We live in the United States of America and we are all created Equal. Our children do not have to suffer. Let’s give them a better chance…… AT LIFE. I ask that you urge our elected official to support Universal Newborn Screening for all treatable diseases.
Some people only dream of Angels, I feel so blessed because everyday I hold one in my arms.
Thank you and God Bless.
HOME FROM CLINIC AT 1:30!!
Our visit with Dr.Kurtzberg was quick! We weaned her solumedrol, stopped a anitbiotic and restarted feeds. Yes, feeds...I feel like this issue will never go away! We are going to start feeding her for 4 hours everyday...same time everyday. We will see if this will work, in two weeks (Dr. K is not in clinic next week) we will be at clinic all day to feed. Dr. K wants to try to see one of these episodes that Ashleigh has when we feed her. I am not thrilled with this...I feel like Ashleigh has been through enough with the feeding trials.
Nothing else has changed. We saw some great friends. Met a new Krabbe family (from the town next to my town in New Jersey), having dinner with some awesome people and making travel arrangements for three great people to come visit us. Oh, and another new krabbe family is on their way...3 more families coming for post transplant studies...a couple of awesome volunteers heading down...great couple of months ahead of us...with Howard on his way for Christmas! Alot to look forward to!!
Tuesday, September 19, 2006 5:34 AM CDT
Being Tuesday, this will be a quick update and I will add to it after we see Dr. Kurtzberg.
Ashleigh has had good and bad days. We still can't feed her. We tried this past week. Her lipase went up and she started to cramp. Saturday, Ashleigh was on her feed and was having a difficult time. I took her off the feed and took her to clinic. She was doing better. Later, the night I hooked her back up and within 15 minutes Ashleigh started having a hard time. She filled up with secretions, was breathing heavy, oxygen dropped to 88 % and her heart rate went up to 177. I took her off the feed, called Sue and we cleared her up. We also decided that the feeds were not going to work, we are not going to try to feed Ashleigh. Today we will talk to Dr. Kurtzberg about our next step. I believe our choices are wait 4-6 months (until the FK506 is completely out of her system)and try to feed her again or we may take her to surgery to look for what this could be. We have already done CT Scans, Ultrasounds, scopes and biopsies, x-rays, blood work and the G-J tube. We can not find the problem and we can't find a way to fix it. Ashleigh can stay on TPN for as long as her body will allow it, we are closely watching her liver very closely.
Ashleigh's hemoglobin also dropped, she may need a blood transfusion today. We think that whatever is going on with the pancreas is also what is causing the pancreas. Maybe a slow internal bleed in her gut somewhere. Nothing to be concerned about.
We made it home to New Jersey this past weekend. Howard's mom flew in Friday morning and drove back with me Friday afternoon. Saturday my friend Colleen and her daughter Amanda ( caringbridge.org/visit/amandasheart ) came over. Well, they didn't leave until Sunday night. We had such a great time. Just relaxing, talking and enjoying some wine. Mackenzie was so happy to have her friend, Amanda. They swam, played and went for ice cream with momm-mom and pop-pop. We always have such a great time with Colleen and Amanda. I really would be lost without Colleen. She keeps me stable!!
Monday we went to the Tom Laffy Annual Golf Outing. This year it was held for our family. We had a great time. I really can't explain what a wonderful family the Laffy's are. I know their parents are looking down from heaven with big smiles on their face and bragging about their children. We met Casey Duffy, a super special woman. We sadly missed Michele Nutter, she was unable to make it. The soldiers from the 5K run were there. I tried to give a speech but it was too emotional so my wonderful friend Collen finished it for me. Ashleigh enjoyed the fresh air. I really don't know how to tell you all how wonderful it was.
Monday night, Howard's mom drove back with me to North Carolina. She then flew home early Tuesday morning. She is another person I would be lost without. It was a hard day for her to do all that traveling and she didn't complain once...but she did get to spend the weekend with Mackenzie and Ashleigh! She was happy!!
Mackenzie is doing great at school. The staff and families at her school are just so wonderful. They have been great. I had breakfast with one of her teacher yesterday. I am so proud of Mackenzie, her kindness to her friends...she is amazing.
Mackenzie is also starting horseback riding on Thrusday. She is so excited. We do have to go get her new riding pants and boots...she is growing!
Howard has his countdown going. 90 plus days until he is home for Christmas. I can't wait until he is hear. He is going to be shocked by how big his girls are getting.
Okay...need to get ready for clinic and Mackenzie off to school. I will update later...promise!
Sunday, September 3, 2006 12:41 AM CDT
I recieved an email from Dr. Kurtzberg yesterday, followed by a phone call from Sue...Ashleigh tested positive for gram-negative and gram positive infections in her airway. She is now on more antibiotics. We also increased her steroids to help with the inflamation in her airway. With her little body battling three different infections, she is tired and worn. She is able to keep her oxygen up, dipping down at times, but not requiring help. She is requring suctioning a bit. Her heartrate is is good. Her blood pressure is a little low, but not terrible. She is very pale, her hemoglobin was dropping. She may need a transfusion next week. Dr. K said she thinks all of these infections can be managed without complications.
The things we are most ooncerned with are her feeding issues and seizure activity. Neurolocially she is not doing well.
We are trying to make it to New Jersey next weekend. Mackenzie wants to see people. Monday, September 11th, Keeping the Faith Foundation is having a golf outing for Ashleigh.
We are very excited. They have been extremely kind to our family. I really hope we can make it up there.
Mackenzie is relaxing this weekend. I think the first week of school was tiring for her. She has off from school tomorrow, she want to party! God help me when this child is a teenager!
Friday, September 1, 2006 10:57 PM CDT
Ashleigh is need of alot of prayers...
We have been culturing her and we found the virus in her stools but we fear there is something else hiding. Today we cultured her secretions from deep in her.
I am waiting for an email from Dr. K, tonight she has a 38.7 fever and has been screaming on and off for hours. I have given her an extra dose of methadone and Ativan, trying to cover her incase it is either pain or seizure. I can not give her tylenol until I hear from Dr. K because of the fever (she may want to see what she does with it). I hit our limit for medications I can use at home. If it is pain, we need to give her morphine, if it is seizure, she may need IV medications to stop it. I know that she is not comfortable and it breaks my heart to see her this way.
We also had a long talk earlier about Ashleigh's issues. We all agree that Ashleigh is neurologically worse, her MRI is stable but the damage that was there has been causing more issues. We can not figure out the feeding/pancrease issues, so we may never be able to feed her again. Dr. K and Sue are very concerned that that they may not be able to fix her this time....
So, once again, I come here asking for your prayers. Simple for Ashleigh not to suffer...for her happiness and peace for her beautiful, perfect spirit. I don't want ot loose my baby girl...
Tuesday, August 29, 2006 11:49 PM CDT
Mackenzie is offically a first grader! She started school this morning. Yesterday, her school had an open house, meet the parents event. We then went to lunch with her new friend Sarah and her mom and grandmom. Howard's mom was with us also. Mackenzie went to Sarah's yesterday after lunch and also today after school. I am going to watch Sarah after school on Monday, while her mom is taking courses at Duke and Mackenzie is going to go there on Tuesday while we are at clinic. Sarah's dad is a Major/Doctor in the Air Force, who is here doing his fellowship for Orthopedics.
Mackenzie loves her teacher and can't wait to go back. She said they are too nice. She also had gym class today. She thought it was so funny to jog in place...she said that you run and run but don't go anywhere! She also enjoyed recess and reading time. During lunch, they have a story read to them. I really like this school. Everyone already knows us and everyone is so friendly.
Howard called this morning, to wish Mackenzie a good first day at school.
After dropping Mackenzie to school, we headed to clinic. Ashleigh was doing well. Her stool culture came back positive for "small round virus". We are on contact isolation, which means anyone coming in our room at the hospital must wear a gown and gloves. I must wear them when I leave the room. Even though this is common for transplant families, we have never had a true isolation culture. We have been on it while the hopital in New Jersey was waiting for the results to come back, but we were removed within 48 hours. This will be this way for about 4-6 weeks.
Ashleigh continues to have problems with lipase, but due to this virus, it may be high. We had to stop feeding her for a couple weeks.
Her seizure activity may also be a result of this virus, it blocks the absorbtion of her medications. Ashleigh had a seizure at clinic today, they gave her IV Ativan to stop it. She was arched the rest of the day.
Mixed blood pressures and heart rates are also most likely seizure related.
Crying and cramping may also be caused by the virus, not the pancrease.
Ashleigh liver functions have come down, we are very happy to know that. The TPN can cause issues with the liver so we have been watching it very closely.
Dr. Kurtzberg was not overly concerned about any of the issues lately, she thought they are most likely all side effects of this virus. She said this virus could be hard on her body.
We sent levels for both her seizure medications today, to see if she is able to absorb them. We also sent her immune functions...this will tell us if we can start doing more with Ashleigh. Although, we are not expecting it to be high, with the new immune medications she is on.
Howard is busy. He has his count down for him to come home for his leave.
Me, I am busy, busy, busy. I am hoping we fall into a routine one of these days. :-)
Monday, August 28, 2006 0:00 AM CDT
Can you believe that Ashleigh is three years post transplant? It just doesn't seem possible. Everything just seems to run together...she has been through so much. I can not even try to list it all. This day brought so many mixed feelings...hope, joy, sadness, celebration of a day that no child should have to endure...
Medically, Ashleigh has had more ups and downs the past few weeks...She had her G-J tube placed. The procedure is done under x-ray, no sedation was used. However, while on the table, I noticed her lips were a little dusky. I also became concerned that she was not waking up, even though they were pushing on her belly. They finished placing the tube and I placed her in her wheelchair...still she didn't stir. I took her up to the bone marrow clinic, she was taken right to Rainbow Day Hospital. Dr. Driscol was concerned by her low blood pressure and her breathing. After several house, they were going to admit her...then suddenly, she was fine. No explanation!
Two days later, Ashleigh had seizures while we were in clinic...another visit to Rainbow Day...narrowly missing another stay in the hospital.
We started feeding Ashleigh through her new tube. Her lipase has slightly gone up, she has blood in her diapers and her hemoglobin is dropping. Ashleigh's liver function also has doubled, meaning the TPN is starting to wear on her.
She is doing great in therapy. She loves her therapist. I have not seen Ashleigh respond to so many things. Jen, her Speech therapist, has her making choices and letting Ashleigh decide what toys she wants to play with. She is also working on switches. Jamie, her physical therapist has been taking her out for bike rides and working with her on the yoga ball and stretching her legs out. Janine, occupational therapist, has Ashleigh playing and doing crafts.
It is hard to explain, Ashleigh has been awake, interacting, smiling and playing...then there are days that she is so sick that we are not sure if she can pull through them. She just amazes me...
Mackenzie is doing well, she is starting school on Tuesday. She is so nervous. Her school had a play date at the park for all the first graders. She met some classmates and played with a little girl in her class. The eye doctor thought Mackenzie's eyes were fine, she said they are working fine together. We decided not to see Dr. Escolar.
Howard is tired...very busy! He doesn't really say much, usually when he calls we talk about the girls and things we need to take care of. Once in a while we will have a little time to talk about where we want our lives to go. Moving down here is a fresh start for our family. We can build the life we want for our family. It is exciting and scarey at the same time.
Please continue to keep Ashleigh in your prayers. I am so blessed to be her mommy!
Monday, August 14, 2006 8:05 AM CDT
Due to the harassment on the guessbook, I am updating!
I do hate when I go so long on updating, it makes it difficult on were to start.
We had some wonderful visitors the past few weeks. Haley and her family, Amber and Zoey, Degan and his parents and Chris and Erin. We have been busy...trying to get settled in and visiting with friends! My computer also died, so I am using Erin's before she heads back to New York today.
Mackenzie is set to start school in two weeks. We are going to get her school supplies today. She is excited and nervous. The school had some concerns with her vision...I of course panic. I talked to Sue and Dr. K about it and we are going to take Mackenzie to the Eye Center at Duke and to see Dr. Escolar for an evaluation. Then we will consider a MRI. I know it seems a bit extreme but the school was concerned with the eyes communicating with the brain (my first thought was a leukodytrophy) and her motor skills. They thought she was above average on her intelligence but about a year behind on her motor skills. Chris and I met with the school on Friday and seeing what they wanted her to do, I feel much better about it. We are going to the eye doctor still and then we will go from there. But the lady from the school could not even do one of the things they wanted Mackenzie to do. Oh, Mackenzie tested as a carrier of Krabbe three years ago, but not affected! Yet, I still was a mess about it....too many children have come into our lives that were one day "normal" and now are fighting for their lives.
I need to find a dance school and horseback riding school for Mackenzie. Mackenzie wants a dog so bad...but I can't do it until Howard gets back.
Howard is doing well. He seems busy and tired most of the time. He has less than a 125 days til he comes home on leave! I can't wait to see him....
Ashleigh is still not able to eat. She is still on TPN. We are going to try a G-J tube this week, to see if that will allow us to feed her. If not she will have to go back to surgery for them to look for whatever this is that is causing her to have so many issues with eating. Ashleigh also was placed back on IV antibiotics...after a week off. She has had a great weekend...showing off for our friends. Smiling, laughing, clicking her tongue and interacting with us. She also had a couple of outings, which she really enjoyed. Ashleigh's seizure have been better. She is almost off of Topamax. The Lamictal seems to be working well for her. We are weaning the solumedrol and she should be off of it within the next two weeks. Her cheeks are getting puffy....she is looking like a steroid baby again! Well not baby, she is only 4 inches shorter than Mackenzie! She is getting so big!
Ashleigh is doing well with her therapies. She really seems to enjoy them. Jamie, Jen and Janine are really great with her. Jamie has been taking Ashleigh out for bike rides in the morning! Ashleigh sits up like a big girl and looks around. Jen has been doing alot with communication and oral motor. Ashleigh is also starting to eat by mouth...popcycles and lollipops! Jen wants to move on to food as soon as we get her pancreas figured out. Janine has been doing alot of art and textures with Ashleigh. They are all great.
Okay, I think that is all I can update on. Thank you so much for checking in on us...and the harassing notes! We really enjoy reading them!
God Bless
Thursday, July 20, 2006 4:14 AM CDT
Okay this needs to be fsst...
The test yesterday that I was concerned about was the Echocardiogram. Ashleigh has never had an abnormal result. It is the one test I like to get, because we hae never had an issue with it.
Ashleigh's came back with episodes of low heart rate. They are trying to talk to the cardiologist to find out how many episodes and how low her heart rate went. We will also be doing a EKG. Dr. Kurtzberg thinks that it is either seizure related or Krabbe causing it. The flow of blood and structure of the heart are normal.
The reason this is so disturbing is because Ashleigh's DNR is for her heart. If her heart were to stop we would not interfer. No shocking her heart, no medications to try to jump start it. If her heart stops we will simply hold her as she leaves our earth and enters God's arms.
Dr. Kurtzberg also does not agree with Dr. Escolar. Ashleigh is moving more than ever and she thinks that Ashleigh is just tired because of the seizures and infections that we have been fighting for the past few months. Dr. K has commented several times in the past 4 months that Ashleigh is moving her head and arms more and even moving her mouth trying to talk. Dr. Escolar saw Ashleigh on a not so wonderful day, we will see her when the line comes out and hopefully Ashleigh will show off all her skills that she has gained.
Since Ashleigh's lipase and amylase (pancreas) went back up, we had to stop feeding AGAIN. We are going to wean the solumedrol this weekend, since it did not work and get a CT scan of her gall bladder and pancrease. Although, we do not have any signs of the TPN affected Ashleigh's liver and other organs, it is not something she can stay on long term. We really need to find the answer to this problem.
We are not going to remove the Topamax for two more weeks. Ashleigh has had too many issues lately to change any medications. We will be getting an EEG today and hopefully that will tell us that we have finally controlled the seizures!
Ashleigh's MRI yesterday shows that Ashleigh's brain is stable. This is only the first reading. Now it will go to a specialist who will look for signs of new myelin. Please pray that Ashleigh's brain is still healing. I was excited for the stable. With all of the issues she has had over the past 7 months, I was nervous.
Ashleigh's MRI of her hips did show that there is some fluid building up. I am not sure how common this is or why it is happening. Right now I am guessing because of her dislocated hips. Dr. Kurtzberg does not recommend us doing this surgery to repair them for several reasons. First the surgery is fairly long, Ashleigh had trouble with her line surgeries this time and we are not sure it putting her under for that long would be good for Ashleigh. Second, children with Krabbe that have had their hips repaired have had more neurological issues after the surgery...most likely because of how long the surgery takes. Third, by putting pins in Ashleigh's hips, it would be another source of infection that we would need to watch for. This could very dangerous for Ashleigh's blood. The final reason was hard to hear but we have never been in denial about Ashleigh's future...Ashleigh will not walk. Nothing is available today or will there be in the near future that will give Ashleigh the use of her legs.
Okay, that is everything from yesterday. I need to get ready for the EEG. We are almost done her studies. Dr. K is on vacation next week so once we get the nerve condution, EKG, nerve conduction and spinal tap, we will sit down and go over everything with more detail. For now, Dr. K thinks we are seeing the results of Ashleigh fighting infections for 7 months.
Thank you for all the prayers. Your support has been a great source of strength for us.
God bless.
Wednesday, July 19, 2006 3:15 AM CDT
Ashleigh had a pretty good weekend. I had a very busy weekend!
Friday morning my furniture from New Jersey arrived. An hour later my sister, neice and Mackenzie arrived. Rena (North Carolina Army National Guard Family Assistant) picked them up at the airport for me. Thank you, Rena!
We spent the day unpacking my stuff. My sister took a breat and took the girls swimming and I headed to clinic for Ashleigh's infusion of daclizumab. Ashleigh's hemoglobin is still hanging on but it is low. Then it was back to unpacking!
Saturday we spent the day setting up our apartment, unpacking and cleaning.
Sunday, my sister and neice left. Mackenzie, Ashleigh and I headed to the apartment for some more setting up our new home.
Monday started Ashleigh's 3 year post transplant studies. It has been busy! I feel terrible because I have not spent much time with Mackenzie because of all the running to appointment.
We saw Dr. Escolar. It was not terrible but it did not go that great either. Ashleigh was a little difficult. All the things she can do and she would not perform. Of course, my sister will say she is not a seal and does not do tricks on command. Dr. Escolar and Dr. Martin (fellow from the Trimper Foundation) thought Ashleigh has lost more skills. I told them I disagree. Ashleigh is moving more now than ever, but Ashleigh wouldn't for them. Dr. Escolar also recommended seeing Dr. Fitch (orthopedic). She does not recommend the hip surgery for Ashleigh two dislocated hips. She has seen other Krabbe children, even ones that were able to walk, loose more skills and have more difficulties. They think because the surgery is so long, it causes more damage to their already fragil brains. She would like to see Ashleigh again as soon as she gets the central venus line out. Dr. Escolar thinks Ashleigh would benefit from Aquatic and Hippo therapies, but can not attend either with her central line. Since we will be living in North Carolina she would like to see Ashleigh more often, every 3,4 or 6 months. She also would like us to schedule appointment with different members of her team and bring our own equipment in. Ashleigh will respond better to the things she knows. I also asked if I would work with Ashleigh next time and she can sit back and watch. Ashleigh only sees her once a year and it takes time for Ashleigh to warm up to people.
Of course, having Dr. Escolar as the first appointment did not go well for my mind...I keep focusing on the test results looking for things to be wrong. I told Sue, I need that appointment to be last from know on... :)
Yesterday was a busy day for us. We had an appointment with Dr. Greene (eye doctor) but when we got there it was cancelled. I was not happy that no one told me. I just headed to clinic. Ashleigh's weight is down, we can't give her lipids because of her pancreas so she is not getting any fat intake right now. We expected this to happen, but we need to watch it. We did Ashleigh's blood draw. Her line gave us a hard time but we were able to get all 40mls of blood. We will do the other half of her blood studies next week. With her hemoglobin being low we did not want to take any more than that. We then headed to Echo, PFT's and chest x-ray. The pulmonary fuction went well, Ashleigh just lets out a big sigh with a mask over her mouth. She always scores high on it! Chest x-ray was clear, nothing on the lungs (no signs of aspiration) and no signs of new compression fractures. The Echo did not go very well. I am waiting to talk to Howard about it and then I will share it with you all. It is not terrible, just different (not in a good way).
After all of our studies, we heading to clinic for 3 infusions (IVIG, daclizumab, and zyvox). Ashleigh's white count was a little up, we are hoping it is from the steroids. We are watching it because she had a low grade fever in the morning. After our visit we headed to dinner at a friends.
Later today we have the MRI of Ashleigh's brain and hips. I told Sue as soon as she gets the results to call me, after Dr. Escolar's appointment and the Echo, I need the MRI results. I also asked them to add a spinal tap. We were not going to worry about doing it this time because Ashleigh's protein has never been that terrible and it has been coming down since transplant but with two not so wonderful results I think we need to see what it is doing. Protein in the spinal fluid is the sign of myelin breakdown. It will be added to her Tuesday clinic in two weeks because Dr. K is on vacation next week.
Tomorrow is the EEG and evoke potentials. Again, the EEG results are extremely important right now because of all the changes to Ashleigh seizure medications.
We still have to schedule a nerve conduction test. Another test that we never pay attention to, but with Dr. Escolar's opinion, I am nervous to see the results. If Ashleigh's nerve conduction is worse, Dr. Escolar may be right about the movement.
I am not settled in yet to the apartment, with all the studies, Ashleigh's care and doing my best to spend time with Mackenzie, I have not been able to work on the apartment. As soon as I do, I will have a new phone number and email for you.
Please pray for Ashleigh's result to improve. She looks so good this week.
Oh, one more thing...our realtor called this weekend, she may have two people interested in our house. She is waiting to hear back from them. Pray that it sells!
God Bless.
Thursday, July 13, 2006 10:07 PM CDT
I was trying to figure out if moving to Durham was the right thing to do. We are moving here, to an apartment, leaving out house, taking Mackenzie away from her friends and school, Howard does not have a job, and leaving family.
Dr. Kurtzberg reminded me on Tuesday this is the best thing we can do for Ashleigh...
I already told you about the weekend. Well, it continued into Monday. Ashleigh's was very labored and I could not clear her secretions. I took her to clinic and she did seem to improve some. Monday night, she was terrible. I held her and cried, giving her oxygen and suctioning the entire night. She fell asleep at 7 am.
I packed up and took her to clinic....
We were at clinic at 8:30 on Tuesday...
Ashleigh was taken right to Rainbow Day Hospital (clinic). She was given oxygen and blood work was done. She was holding fluid and her weight was up. Sue gave her lasix and antbiotics. Ashleigh was scheduled for IVIG, but we cancelled it. Ashleigh's hemoglobin was down and they thought about giving her a transfusion. The blood could have helped her breathing but the risk of overloading her was too scary. Ashleigh's x-ray was clear and her pancreas was normal. Dr. Kurtzberg asked me if I felt comfortable going home or if I wanted to go inpatient. There was not any beds on 5200 (bone marrow unit) and we would have 5100.
I said I would rather go home. After asking me if I was sure several times, Dr. K agreed to let us go. I went down to get the portable oxygen out of the car, and when I got back up to Ashleigh's room, Dr. K was giving Ashleigh a dose of IV solumedrol (steriod). I asked why and her answer was simple...it is a shot in the dark, but if her airway is swollen the steriod would help. Well her shot in the dark was the answer Ashleigh needed. Within an hour, Ashleigh was breathing better. Wednesday she was off of oxygen and I have not suctioned since! She is doing amazing!
It was so simple for Dr. Kurtzberg...that is why we are moving here!
My sister, neice and Mackenzie are coming tomorrow, so is my furnture from New Jersey! The moving company is suppose to be here at 8 am, my family at 9 am. My sister is going to stay the weekend to help me unpack.
Very exciting!!
Sunday, July 9, 2006 9:23 PM CDT
I am sure you are all surprised to see another update so soon. :-)
Yesterday, Ashleigh woke up with some retching (trying to throw up, but can't because of nissen). She had alot of secretion problems and required some oxygen. As the night went on, she had more difficulty with her breathing.
This morning, I called clinic and they said to bring her in. Our first thoughts were that she came off of antibiotics on Wednesday, infection! When we arrived at clinic, Ashleigh had cultures drawn from both her central line and her port. They also drew labs for her blood counts, chemistries, OP15, mag., lipase and amylase. We then went down to x-ray.
Her x-ray was clear. Her blood cultures will take 48 hours. Her white count is in normal range. Hemoglobin is low. Friday it was 10.1, today it was 9. Most likely she will need a transfusion on Tuesday. The only other concern was her Amylase was 166 (normal is 30-110) and her lipase was 1174 (normal is 23-208). Her pancrease has flared up again. She had two doses of morphin and we increased her methadone again. We are going to try to feed her as much as we can (no more than 8 ounces a day), we need to try to build her feeding back up so we can stop the TPN. Although, her liver functions have stayed in normal range, TPN can be extremely hard on the liver. We really want to get her off of it. We will recheck her pancrease on Tuesday and see where it is going, then going from there.
Ashleigh is more comfortable now with the added methadone.
Her seizures are also acting up today. Oh and she is holding fluid, so we had to give her lasix!
Please pray for her comfort!
Friday, July 7, 2006 8:11 PM CDT
Can you believe the first week in July is already over!?!
There is so much to say and I am not really sure where to start...let's see...
Ashleigh is eating 2 ounces of formula 4 times a day! 8 ounces total! We are very excited about it! She is still on 14 hours of TPN. Her lipase and Amylase is starting to climb so we need to watch it to make sure we do not make her pancrease flare up again.
We have made several medication changes trying to find the answer to all the seizure activity. The new medication (lamictal) is not at a treating level yet. We removed the Klonopin because it was causing thick secretions and Ashleigh could not handle them. Her topamax is down to 25mg, from 100mg (we are excited about that). Ashleigh had an EEG on Wednesday, it did not show any improvement but Dr. Kurtzberg said she just wanted to make sure we were heading in the right direction and they were not getting worse. She thinks Ashleigh will need another month before we see improvement.
We increased Ashleigh's FK506. This is the medication that keeps her immune system weak. She had a pretty good flare up of graft vs. host disease and her FK level was very low.
Ashleigh is doing better with her therapies. She really likes Jamie...smiling and giggling for her. She was also performing for her new speech therapist, Jen, today.
We are excited to have Ashleigh's care almost in order...we are still working on the OT, Aquatic and we are checking into some options for Hippo. Her respiratory and supplies are in order and of course clinic on Tuesdays and Fridays. This is our first weekend off...not clinic on Sunday!!
All of Ashleigh's labs are good...her hemoglobin is a little jumpy, we thought we were going to have to give her a transfusion this week but she balanced back up on her own!!
Mackenzie is having a ball at the beach! Being spoiled by her mom-mom and pop-pop. She told them she was bored on day...she is on vacation and it is time to party! Please, pray for my sanity when this girl is a teenager. She is enrolled in her new school here in North Carolina. Next we need to find her a horse farm and dance school. We also have several play dates set up for her with some people that we know from clinic.
Howard is doing good...he has a countdown on his computer that tells him he is 28 percent complete his time in Iraq!
We are staying in one of the Hunter's Hope apartments for a couple of weeks while we have repairs down to our apartment. My furniture will be here in a week or two!
There is a nationwide article coming out in a couple of days about military families with deployed soldiers and sick children. It will be like the one that ran a couple weeks ago, but this one will have Ashleigh, two other children and our sweet Angel Noah Prichard featured in it. I could not thank Rebecca from the AP enough for telling our story and spreading the word about Krabbe and the need for transplant.
Can you believe we have doing this for 3 years? Ashleigh will be 4 years old in November! All her anniversaries are here. This year has been easier...I think I am too busy to think of them. I still remember what the doctors were wearing when they told us she had Krabbe. I remember that first night coming over the hill and seeing Duke lite up in the dark.
We have been blessed with such wonderful people in our lives over the past 3 years! I amazed by the people we have met...their compassion, kindness, support, love and prayers. Thank you for being so wonderful to us!
God Bless.
Tuesday, June 27, 2006 8:21 PM CDT
Another quick Tuesday at clinic.
Ashleigh had some breathing issues so she was put on oxygen and we were in Rainbow Day for clinic.
Dr.Kurtzberg thought Ashleigh's blood results were good. Her white count was up so we switched antibiotics to a broader treating antibiotic.
We are also going to try to feed Ashleigh this week. We are waiting for a new formula to be delivered then we will start with one ounce four times a day.
That is really all that is happening with Ashleigh.
I was able to go home for Mackenzie's dance recital on Saturday...it was incredible...she did awesome. I can't believe how grown up she has gotten...I feel like it was yesterday that I was rocking her.
Howard's mom brought her down last night...they are here for the week and then heading to the beach...I wish Ash and I could join them. I didn't even ask Dr. K what she thought about that...I know she will not want her to leave Durham, with her starting feeds.
Thank you all for your well wishes, you have all been amazing to our family, we appreciate your support, kind words and prayers more than words could express.
Thursday, June 22, 2006 8:21 PM CDT
First, we would like to thank you all for your kind messages both on Ashleigh's websites and emails. Your words of encouragement and your offering of prayers are priceless.
Ashleigh had another difficult week.
Saturday and Sunday, she had to go to clinic for electrolyte and chemistry problems. Nothing exciting...which is good for us lately.
Monday, we were at clinic, we saw Michelle (Sue was not in clinic)...everything was okay. We went to leave and Ashleigh turned blue. They put her her on pulse-ox and her saturations were 72. They hurried her to Rainbow Day Hospital (a mini hospital at clinic) and put her on more monitors and oxygen. Her lungs were crackling so they did a chest x-ray, but it didn't show anything. The doctors all talked and all agreed it was most likely a seizure. We headed home on oxygen.
Tuesday, we were in and out of clinic in 4 hours! Yes, on a Tuesday, yes, Dr. Kurtzberg was there!! We made a few medication changes, hoping to better control her seizures. Her white count was up, we restarted her antibiotic. She was off of it for 36 hours!
Wednesday, Ashleigh's new central line has been bleeding under the dressing and looks a little red and leaking...well of course she has an infection in there. The good news it is in the tissue and not in the line, so she doesn't have to have the line removed. The bad news is she is on IV Zosyn.
Today, well Ashleigh looks good. Her graft vs. host is drying up. She smiled and laughed. She enjoyed therapy with Jamie. Her blood work looked great. However, she has not urinated much all day. Her creatnine is fine, BUN is a little high but actually low for her. She is not puffy with fluid. We are just not sure where the fluid went...800 mls of TPN plus oral medications, plus IV medications....
We have clinic again in the morning.
Many of you have asked about Howard. He is doing okay. He said it is really hot there...I thought Durham was hot, it is about 120 to 140 there. He said they have good sleeping areas and food, but it is so hot he doesn't want to eat. He has lost 13 pounds already...just a little pressure for me! He saw Toby Keith in concert for Memorial Day. Oh, the New England Patriot cheerleaders were there the first week he got there...that was funny. All in all, he sounds in good spirits, tired, but good...having a hard time being away from the girls, especially with Asheigh have such a hard time right now.
Mackenzie is enjoying swimming with her mom-mom and play dates with her friend, Danielle. She is coming to visit me next week but going back to New Jersey to go on vacation at the beach with her mom-mom.
The military insurance, TriCare has been incredible. They are going to give me a nurse a couple days a week to help me with Ashleigh and so I can have some time with Mackenzie when she moves down here.
Okay, I have to get back to cleaning this apartment and drawing up meds. for the morning.
Sunday, June 18, 2006 10:47 PM CDT
Last weekend was better for Ashleigh. Monday, Ashleigh was released from the hospital. That night, she was in alot of pain so after many phone calls with our wonderful nurse practitioner, Sue and Dr. Kurtzberg, we made Ashleigh comfortable.
Tuesday we arrived at clinic at 10 am...we left at 9:30pm. Ashleigh received her monthly dose of IVIG. Then Dr. K wanted to keep an eye on her for the day. It was a long day, but knowing that the nurses were watching Ashleigh, I was able to get some very needed sleep (in clinic).
Wednesday, Ashleigh had her central line and port fixed by Dr. Skinner. After surgery, Sue and Dr. K wanted Ashleigh to be watched in clinic. After several hours there, Ashleigh started to have some electrolyte and breathing problems, so she was admitted back to the bone marrow unit. She spent the night and was discharged on Thursday.
Thursday night, Ashleigh had too many seizures to count. It was a terrible night for her.
Friday, we spent another long day at clinic. Sue had many phone calls with Dr. K and they came up with a plan to control the seizures. It is working, she is doing much better with her seizures.
Saturday and Sunday we had to go to clinic. Nothing exciting on Saturday, Sunday Ashleigh needed fluids and some Bi-carb.
We have to take blood to clinic in the morning. Depending on the results...
Sadly, sweet baby Ella Cooley earned her wings on Wednesday. I had privledge of holding Ella when she was born. Please keep Ella's family in your prayers...
www.caringbridge.org/visit/cooley
Saturday, June 10, 2006 9:37 AM CDT
I thought this update was going to be much worse, but I think things are turning around.
Ashleigh had a extremely hard day yesterday. I will break it down with each issue since she has so much going on. First, Sue (Ashleigh's NP was up her for 2 hours last night, leaving at 11pm). Dr. Kurtzberg called, we talked for a bit, reviewing each issue and going over the DNR. We agreed on what measure we wanted to take and what ones we did not feel would be beneficial for Ashleigh. It was a difficult conversation. We also discussed bring Howard home.
Okay on with the issues...
Ashleigh had more than a liter of extra fluid on her, causing her to having many breathing issues, her lungs were very "wet". Her chest x-ray was somewhat clear, showing that she has small pockets of collapsed lungs, caused by surgery. We gave her lasix to help get some of the fluid off. She is still puffy, but we she has a third dose of lasix running now so she should start releasing the fluid. Her kidney functions are in a good range, so we know that is not an issue.
Ashleigh's pain was being controlled with many drugs and with the medications needed to control the seizures, Asheligh became over sedated, which also added to difficulty breathing. Missy (doctor) gave her narcan (spelling?), it is a drug that will clear the morphin and methadone out of her system to help wake her up. Ashleigh responded to the first dose and we kept a second dose bedside incase Ashleigh couldn't breath from sedation. We also held her pain medications last night. Ashleigh was so sedated she did not require them. This morning she has some slight signs of withdrawl from the methadone and she was awake so she had her morning dose. She has not required morphine in 24 hours.
Okay, on to seizures. After being woken up with the narcan, Ashleigh had some seizures. We gave her a dose of Ativan (she has been on it for a long time and it dose not sedate her anymore), Ashleigh stopped seizing and she stayed awake for a bit. We held her klonopin yesterday and restarted a lower dose this morning. Our goal is to find a combination of medication that will not over sedate her but control her seizures and pain.
Ashleigh's color yesterday was what scared me the most, she was white...no pink what so ever on her...her lips were white, around her lips were blue. She looked terrible. We gave her a blood transfusion. Her hemoglobin was trending down, not low enough to require a transfusion but we gave her one to help perk her up a bit. By doing this we added more fluid, so we need more lasix. Also, she required benedryl for a transfusion so we had to take the risk of sedation.
Ashleigh went for a dye study yesterday also. We need access to her port and we need to know if it would work, especially in case of an emergency. She was taken down to x-ray with a face mask for oxygen and a bag in case...
Her oxygen requirement was 15 liters. The dye study did show that the port will work, however we will have to have it repaired or replaced in the furture. It is too deep in the chest and it is "floating" around the atrium of the heart. It not as dangerous as it sounds, it just can't be in there long term and right now Ashleigh is not stable enough to go to surgery. Oh, and her central line wouldn't work for a bit yesterday, we put TPA in the line and we got it to work again...
Okay, I think I covered everything...seizures, pain, sedation, port...
Talking to Sue and Dr. Kurtzberg did give me alot of comfort. I know they will do what is best for Ashleigh. I know they truely care about her and that she is receiving the care that she needs.
Friday, June 9, 2006 8:05 AM CDT
Things are not as good as we thought they were...Ashleigh needs your prayers, desperately!
First, the EEG. Dr. Kurtzberg did not like the results, really didn't think they were correct. So, the specialist that reads leukodystrophy MRI's for the transplant team read Ashleigh EEG. He said in between the spikes (spikes are potential for seizures) are seizures. We are trying very hard to control them, using different medications. The medications may sound crazy but I will try to explain it...Topamax was weaned down (her levels are high and it is not working, it is also hard on the pancrease), Lamictal was increased (this is a new drug, that needs to be increased very slow, because of reactions), Ativan was increased (Ashleigh has been on it for a very long time and Ashleigh's body is use to it), Zonegran stayed the same, Klonopin was added (just for coverage until the lamictal is at a treating level and because the topamax is not working). We are hoping that after the lamictal is at a treating dose, we can take away the klonopin, topamax, ativan and possibly the zonegran (that is a big maybe).
Okay, as for pain. Ashleigh's still in alot of pain. Her pancrease is healing however she is still hurting. She is taking morphine every 2-4 hours. We also increase her methadone a whole lot...1.5mg three times a day (she was on .15 twice a day) Notice the points in the dose!
Ashleigh is also having a hard time due to the surgery yesterday. She had a port and central line placed. However, the port is not working. The doctors are hoping that the port will be okay when the inflamation goes down. Otherwise, it would mean another surgery. The other problem is when you have a new line placed, you are suppose to culture it, we are unable to draw blood from the port. Ashleigh is already receiving antibiotics so she should be covered.
With all of the changes to Ashleigh's medications, Ashleigh is sleeping alot. At this point I don't want her to be in pain and I don't want her seizing. Her skin is very pain, her lips are white. She looks terrible. Please, pray for her.
On a good note, we sold our house. It was up for sale for 10 days and I accepted a bid on Wednesday. It will be one less this to worry about.
This morning at 9:10, sweet Zoe Bachman was removed from life support. Sing, dance, run and sing sweet Angel baby.
Her mom, mamaw and family are in our thoughts and prayers. Please add them to your prayers. www.caringbridge.org/visit/zoebachman
Wednesday, June 7, 2006 9:19 AM CDT
Ashleigh's pain medication was switched last night to morphine. After 2 doses of the other medication, a large dose of methadone and ativan, nothing seemed to make her more comfortable. We were lucky to have an very patient, and kind fellow who sat with us until we found a way to make her painfree. Minutes after the morphine went in Ashleigh stopped crying and slept through the night. She woke this morning, arching, bridging her legs and crying, morphine again made her more comfortable.
Her EEG yesterday was not terrible, but not good either. In the past her EEG would show "periods of slow spikes", yesterday was "frequent epilepic spiking". Saying...there was ALOT of potential for seizures but no active seizures...meaning...at the time of the EEG she did not seize. We are waiting for a plan on how to handle them.
Ashleigh had a x-ray late last night, we have not heard the results from the radiologist yet, the fellow that was up here last night (she was awesome) felt that Ashleigh had a black area on her belly...we thought it might be gas but we will get the final results today.
The surgeon and Dr. K are trying to figure out the best plan for the surgery. No news yet.
No news about switching medications...I was told it will be discussed at the meeting today.
They moved Ashleigh's TPN from 14 hours a day to 20. It will help her stay better hydrated.
She is having her wheelchair fixed today and ordering a new seat for in the house. Dora, our inpatient PT, is coming to help us with the ordering. We met a new therapist who has alot of hope for Ashleigh using switches...I really like her, she is agressive and determine to see Ashleigh communicate with us. I also love that she believes in Ashleigh.
I am waiting for the doctor to come in. Sue said she will come up after the meeting tonight, I am hoping Dr. K does too. Ashleigh just has so many issues going on right now. I like the doctor that is on right now, he is really good, he just doesn't know Ashleigh's baseline...he also goes through Dr.K for all major things. I would just feel better to have Dr.K and Sue look at her, they know her best.
Monday, June 5, 2006 10:49 PM CDT
Well, let start with some good news...Ashleigh gallbladder is okay. She will not have to have it removed. The pancreatitis is most likely being caused by the use of FK506 and topamax. We were already in the process of stopping the topamax. We will discuss changing the FK over to another medication.
Ashleigh has somewhere between 15-20 seizures today. She spent most of the day crying and seizing. We have had several medication changes today to make her more comfortable, but she is still having issues with her breathing, heart rate and fussing. We had to add a pain killer tonight, it slowed her heart rate some and stopped the crying...Hopefully she will be able to get some sleep soon.
In the morning she will have an EEG to see what is happening with the seizures.
We are also hoping to go to surgery on Thursday to place a central venus line in Ashleigh's chest. This will be like the ones she had during transplant. We will also have a port placed. The reason for both is...the port is not designed to be used as much as we need it right now, the central line can be. By doing both at the same time, we will not have to go to surgery to place a port later and Asheigh can have the central line removed in clinic. Of course, Ashleigh has to be doing much better before we can go to surgery.
Ashleigh has a skin breakout from GvHD, this is a little concerning because we are going to be changing her FK506.
Monday, June 5, 2006 11:31 AM CDT
We are still waiting for the results of the ultrasound, it was done early this morning...I am hoping when the doctor comes in he will have some answers on where we go from here. Please pray that it will not involve her gallbladder and Ashleigh will not require another surgery.
Ashleigh received a blood transfusion this morning. Her hemoglobin dropped to 7.8. This could be from the pancreatitis or it could just be from surgery on friday.
She is having alot of issues with seizures today, she has had about 10 so far today...we are going to keep an eye on them, since they are mild and only lasting 10-15 seconds we are not going to do anything yet, if they get worse we will have to medicate her to stop them...
Please say some extra prayers for our friends who have children that are going through a tough time right now. The Kristoff family is extremely special to us, their daughter, Alyssa, is in PICU at their hospital at home...
www.caringbridge.org/ct/oursonryan
Also, a new transplant baby from here was moved to PICU yesterday, Ella Grace is also in need of some extra prayers. www.caringbridge.org/visit/cooley
Please keep both of these families in your prayers.
Sunday, June 4, 2006 2:34 PM CDT
When it rains it pours...
We had an awesome nurse yesterday who recommended that the doctors test Ashleigh's enzymes...it turns out that Ashleigh has Pancreatitis. It is a slightly common side effect for transplant patients. In the morning she will have a ultrasound to check her gallbladder. If she has gallstones or the gallbladder is involved she will need to have it removed. Other causes of pancreatitis are medications such as FK506 and viruses. If the ultrasound is clear we will remove Ashleigh from FK and try another medication.
Ashleigh hemoglobin is also low, 8.4, she will require a blood transfusion if it goes below 8. Her white count is slightly climbing...we are just watching it. She had a blood culture drawn early Saturday morning, it is still negative. She will get another culture in the morning. Infections can cause both the low hemoglobin and elevated white count. However, so can pancreatitis.
Thank you for all the emails...I am so sorry I have not responded to most of them, Ashleigh is keeping me extremely busy.
Mackenzie has her first loose tooth...very exciting!
Saturday, June 3, 2006 3:32 PM CDT
Ashleigh had surgery yesterday morning. They attempted the PICC line, but they were not successful, so they put a line in Ashleigh's chest. Due to the infection, they could not anchor it in so we were admitted to the hospital. Ashleigh will receive antibiotics for a week and then have a new port placed. We are also trying to sort out her seizures and eating issues while we are in here.
Last night, we tried Ashleigh on a pump feed, at a rate 10cc per hour, it did not work. Within two hours, Ashleigh was having some retching, high heart rate, and breathing hard. WE stopped the feeds and Ashleigh went to sleep...issues ended.
Mackenzie is going to see a play tonight with my sister, next weekend she is going to New York City, she will go to the American Girl Store and the Statue of Liberty. She is going to be so excited. Her mom-mom and pop-pop are going to give her an awesome weekend!
Howard is doing well. He has his countdown to come home...it is too long for me to think about right now.
Ashleigh is 1010 days post transplant.
Next week will be the anniversary of her diagnoses. This is a hard time of year...the memories of it all...sitting there, what the doctors were wearing, what they were saying, their different opinions, crying, Howard crying, holding her, looking at her and knowing...then it leads us to celebration and HOPE!
There are two people looking at my house, no word yet, it offically went up for sale last week!
I think that is about all for now...I will update soon, PROMISE!
Thursday, June 1, 2006 10:21 PM CDT
We have to be at the hospital at six in the morning. The plan is to try to place a PICC line first, if they can get it in Ashleigh will go to surgery and have the port placed...we will be home by noon. If they can not place the PICC, Ashleigh will go to surgery have to port removed and a IV line inserted into her neck, we will then be admitted to 5200 for 5-10 days of anitbiotics and a new port placed after treatment.
By attempting the PICC first, we will avoid the chance of two surgeries in one day.
Ashleigh had some very strange blood work today, some things were too low, some were too high...not sure what to think...we are going to re-test before and after surgery tomorrow.
Please say a prayer for Ashleigh. Also, Alyssa Kristoff is still in need of alot of prayers... www.caringbridge.org/ct/oursonryan
I will update after surgery...
Wednesday, May 31, 2006 8:55 PM CDT
Yes, I am updating!
Carolyn, we are almost BLUE DEVILS! My house is for sale and we are in the process of moving down here. My mail has been switched over and I am in the process hiring a moving company. Howard and I feel this is the best move we can make for Ashleigh and our family. It will absolutely help my mental being!
Alot has happened over the past month and I am so sorry it has taken to long to update.
The beginning of the month we did the Rainbow of Heroes walk in honor of all transplant children at Duke. The event raised $167,000 for family support. I got to see some very special people. My friend, Colleen made great shirts with Ashleigh's picture on them in honor of Ashleigh diagnoses and transplant.
The New Jersey Army National Guard Officer Canidate Class did a 5K run for Ashleigh on May 20th. We were not able to attend because Ashleigh tested positive for a gram-negative infection in her blood so we could not make the journey to New Jersey. Ashleigh was on 2 IV antibiotics for 2 weeks. Two days after we stopped treatment she was re-cultured and again was positive. We are going to have to port removed on Friday. Ashleigh has to be at surgery at 6 in the morning. They are going to try to place a line in her arm before the surgery, if they are not able to place the line, she will have a line placed in her neck and we will be admitted for 5-10 days for antibiotic treatments and then have another surgery to place a new port.
Ashleigh was doing well. She continues to be on TPN. We are trying to feed her, we are increasing to 1-2oz, four times a day. She has alot of dirty diapers and some retching. Her liver functions have remained normal and her kidney functions are still a little elevated...but not as bad as they were.
We increased Ashleigh's methadone and Ativan to make her more comfortable. We also added a new seizure medication, with the plan of removing an old one in a few weeks. Dr. K was a little concerned about how Ashleigh looked this week in clinic. The two things we are concerned about are "Is Ashleigh in pain" and "Is she having uncontrolled seizures"
Please pray that things go okay with the surgery and Ashleigh handles it okay.
Please add Alyssa Kristoff to your prayers...she and her family are extremely special to us and little Alyssa is having a very difficult time right now. www.caringbridge.org/ct/oursonryan
Thank you.
Wednesday, May 3, 2006 0:37 AM CDT
I am so sorry to say that Ashleigh's surgery did not give us the answers we were looking for. Her colon was tender and extremely raw, fragile they said. They still have cultures out to see if there was a viral infection that could have caused this damage. For now, Ashleigh will remain on TPN and lipids. They are going to look for new formula options for her to try...otherwise, we are not sure where to go from here.
Ashleigh had a difficult time after the surgery...she was on a vent during they procedure. She had her tongue, and both lips cut from the tubing. They also knocked her tooth a little loose. We think it will be fine, so we are just keeping an eye on it. Her body temperture was extremely low and they had a difficult time warming her up. They used heated blankets for a while. It was so low that it wouldn't even register. When they did get it, it was 32...slowly moving up to 36. We left there and went to clinic. We stayed there for a while and then headed home.
Today, we saw Dr. Kurtzberg and talked about some ideas on where to go from here. Basically, we have many issues surrounding us that I think it might be best for us to move down here. I am going to start making plans to have some things done to our house to sell it and looking into schools, dance and horseback riding for Mackenzie. I hope to have this all settled by the end of the summer so we can relax and have a home set up for when Howard comes home for his two week break from duty.
Although things are not looking as bad as last week and Ashleigh is looking better, even smiling a few times, they are hopefully going to turn around for her soon. Still, we can't take the chance of this happening over the next year, so moving looks like the best option right now.
Wednesday, May 3, 2006 0:06 AM CDT
I am so sorry to say that Ashleigh's surgery did not give us the answers we were looking for. Her colon was tender and extremely raw, fragile they said. They still have cultures out to see if there was a viral infection that could have caused this damage. For now, Ashleigh will remain on TPN and lipids. They are going to look for new formula options for her to try...otherwise, we are not sure where to go from here.
Ashleigh had a difficult time after the surgery...she was on a vent during they procedure. She had her tongue, and both lips cut from the tubing. They also knocked her tooth a little loose. We think it will be fine, so we are just keeping an eye on it. Her body temperture was extremely low and they had a difficult time warming her up. They used heated blankets for a while. It was so low that it wouldn't even register. When they did get it, it was 32...slowly moving up to 36. We left there and went to clinic. We stayed there for a while and then headed home.
Today, we saw Dr. Kurtzberg and talked about some ideas on where to go from here. Basically, we have many issues surrounding us that I think it might be best for us to move down here. I am going to start making plans to have some things done to our house to sell it and looking into schools, dance and horseback riding for Mackenzie. I hope to have this all settled by the end of the summer so we can relax and have a home set up for when Howard comes home for his two week break from duty.
Although things are not looking as bad as last week and Ashleigh is looking better, even smiling a few times, they are hopefully going to turn around for her soon. Still, we can't take the chance of this happening over the next year, so moving looks like the best option right now.
I have talked many times about how much people have helped us and supported us...it is amazing to me the emails, phone calls and messages I get from people that I never met in person. I can never thank them enough for the support they have given us...the simple message saying..."thinking of you all" means alot, especially when things are rough. It also shocks me that people can also turn their backs during the roughest times of ones life. Is it easier to close the door when the ones you are suppose to love are going through hard times or do you take in the hard times with them, support them, and accept them even during some of their darkest times? People from all over the country (world for that matter) have emailed me about Ashleigh these past two weeks. I thank you for accepting us on our bad days, our days of tears, laughs, anger and pure self pity. We are not perfect and we may not say or do the right things sometimes but we are caring for our child who is fighting for her life. It makes me cry that she has touched so many lives, yet so sad by they ones that has not been softened by her beauty.
I post the poem below again, because MY Ashleigh's suffering soul is a beautiful gift that we may only have for a short time...thank you for those of you who have given her life honor and choose to share it with us.
God Bless.
Friday, April 28, 2006 11:06 PM CDT
It seems lately, I have had a difficult time updating. Not knowing what to say, how to say it or simply were to begin. Tonight is no different.
I ask this...is there such thing as mothers intuition? If there is how do you when it is panic, fear or true? I remember when Ashleigh was first showing symptoms, I questioned things, but I thought I was panicing...now I know I was being a mother...a mother who in her heart knew something was not right, true.
I have talked many times of the HOPE Duke has given us for Ashleigh. When we are here there is a sense of security and therefore giving us HOPE. Duke is the best place for Ashleigh, it was 2 3/4 years ago and it is still today. Regardless of what happens, they gave Ashleigh and our family more than words could ever express. Ashleigh has enjoyed smiles and laughs. She has always be comfortable and has not and will not suffer.
So tonight, I ask is it a mothers intuition when she is not feeling HOPE from the one place that has always given it. Or is the feeling in her heart, what she has always known, her daughter will not be with her forever just causing panic. Does this intuition mean Ashleigh will never do the things that her parents dreamed of. There will be no school buses for this sweet 3 year old, not ballet class, no Barney Live shows. There will be no school shopping trips, lunches out or movies. There will be no proms, graduations, college or weddings. She will never experience the greatest gift in life, being a mother.
Ashleigh's kidney functions are better, not wonderful, but better. However, today, for the first time in 2 years, Ashleigh received a blood transfusion. Her hemoglobin dropped to 8.7 yesterday, today it was 7.6. We repeated it thinking it had to be wrong but it wasn't, the second blood test came back as 7.7. She was pre-med with benedryl and received a three hour infusion. We are at a lost, Sue is stumped, and the scariest of all...Dr. K does not know what is happening.
Monday, Ashleigh will have scopes to see what is going on inside her digestive system and the plan is to do some biopies. We are hoping for answers.
For now, Ashleigh is not smiling. Has not for about a week. She has not responded to me, her mom-mom and even her big sister. Her eyes look empty, tired. Her sparkle is not there. What does this mean? Is she slipping away from me? Or is she simply fighting whatever this is?
Last year, Hunter's Hope put a shirt out at the medical symposium. It read "Some people only dream of Angels, I have held one in my arms."
Not only is she my angel, she is my hero.
I ask that you pray...just simply for peace in whatever God's will holds for Ashleigh.
Wednesday, April 19, 2006 11:03 AM CDT
Yesterday we arrived at clinic around noon. We were feeling a little lazy in the morning...
I don't know where to start...Dr.Kurtzberg is not concerned about Ashleigh's kidneys. Actually, the issues with her creatnine (kidney functions)are high because of dehydration, caused by the diarrhea...meaning we need to find the source of the diarrhea! Ashleigh is not absorbing medications and nutrients. Starting this afternoon, Ashleigh will stop feeds and most medications and receive TPN. Also, referred to by some families as "Cheeseburger in a bag". It is bright yellow and she will receive it through her port directly to her veins. The only thing going into her g-tube will be medications that could not be switched over. This is a huge step backwards. We know that whatever is going on in Ashleigh's gut is causing the problem, so we are also making an appointment for her to be scoped, get pictures of what is happening in there. On Saturday, we will also add Lipids, because Ashleigh is loosing alot of weight for her already small body.
When we first arrived at clinic we pumped her with IV fluids, 200mls per hour for two hours then backing down to 80 per hours for 6 hours. Dr.Kurtzberg wanted to keep her there for a long time to make sure her lungs stayed clear while we were giving the kidneys the fluid they needed.
I had some pretty great visitors, the Shells (Dalton is the first transplanted Krabbe child at Duke..he is awesome)and the Sears, back for transplant studies. Kelly came to visit. It made the time go by with all the visitors.
Ashleigh gave me the scare of my life Monday night. I fell asleep with her on my lap while watching tv. I woke and she was freezing cold...I can not tell you how cold her body was. She was white...even her lips. I shook her chest, with no response. I lifted her up and called her name...nothing. After what seems like forever, which I am sure was only seconds, Ashleigh took a deep breath. I put her on her pulse-ox in her bed...she was great 98 - oxygen, 90 heart rate..I wrapped her in many blankets and watched her...scared of her leaving me.
I recieved a call this morning from a man named Bill Laffey. He has a foundation called Keeping the Faith in honor of his father. They are having a golf tournament in September and they would like it to benefit Ashleigh! It amazes me how kind and generous people have been to our family and I could never thank everyone enough for their support. Ashleigh has touched so many people.
Howard is doing okay. He went to a movie on base and he goes to the gym everyday to keep busy...outside his duties. He sounds tired, but he is doing well.
Me...I am tired and emotionally drained.
Mackenzie is doing well. I tried to be the irresponsible parent and keep her here for another week. Missing school...but my little genius said no, she said she had to go to school because Mrs. Warner would miss her, she needed to get smarter than she already is and she wants to be helper in the classroom. She also missed her mom-mom (Howard's mom) who has been taking care of her. As sad as I am that she can't be with me, it makes me feel good that she is happy where she is and she is loved! Someday, I will find a way to show everyone how much I appreciate everything they do for us...especially the care they have given Mackenzie, sweet messages, and many prayers.
Sunday, April 16, 2006 10:59 PM CDT
Happy Easter to all of you.
Where to I begin on our last couple of days...
Dr. K said on Tuesday that Ashleigh would most likely be able to go home this coming Wednesday. Well, Ashleigh didn't like that idea...Friday, we went to clinic and she was fine. Friday night and Saturday morning, she was not tolerating her feeds, I switched her to pedialyte. That didn't work. I emailed Dr. K, she said to go to clinic. Mackenzie and Sarah went to the pool and Ashleigh and I headed to to clinic. We ended up being there for 5 hours getting iv fluids, her kidney functions were high and we retested after the iv and her kidney functions went even higher. After much talk, we ended up going back to the apartment. This morning we had Easter (Ashleigh slept through it, actually she slept 98 percent of the day), Mackenzie and Sarah went with us to clinic in the afternoon. Ashleigh was tolerating her feeds better so I foolishly thought we would be in and out. Well, Ashleigh kidney functions went even higher and she needed 9 hours of iv fluids. Okay, creatinine levels...1.7, 1.9, 2.6 and the last 2.1! Yes, they are pretty high! The plan is to go to clinic in the morning and retest her blood and set up iv at the apartment. We also held her FK506 tonight, because it is one of the meds that is extremely hard on the kidneys. I am nervous about this because her FK level was already low and she has had some skin graft vs. host disease last week. The plan to go home is well, that's no longer.
They think the kidneys are dry because of all the diarrhea. Yesterday ended 16 dirty diapers! She is not holding anything. We have symptoms of her body not absorbing anything...even medications.
Mackenzie is going back to New Jersey tomorrow and I am heart broken. She said she doesn't want to, dance, school and nothing else is as important to her as being with me. I am heartbroken. I have already started crying. She helps me through all of this and I really need to be with her. I wish I knew what to do with her. She is in kindergarten, in school until mid-June. She has a concert on Friday and a dance recital in June. Do I continue to be seperate from her, or do I just move her down here with me and have her home schooled for the rest of the year. Missing out on having friends and activities. Is being with me and Ashleigh more important than have a semi-normal life? Howard's mom has been taking care of her and she loves being there, then on weekends she goes to friends house...so she is with other children. I don't know what to do...all the other times she was down here with me because she was not in school and we had Howard traveling back and forth. I can't stop crying...
Howard is doing well, just a bit tired. He calls every other day and emails opposite days. His calls are timed so usually we get to cover the girls, mostly Ashleigh, and then he has to go.
I have more to fill you in on but I have to go...time for medications and pedialyte! I will write tomorrow after clinic.
Hope you all had a wonderful Easter. God Bless.
Sunday, April 9, 2006 11:56 PM CDT
Ashleigh has had some "better" days. She is still requiring suctioning at times and still having many, many diapers, but she is more content. Not as fussy and a bit too sleepy at times. We have gotten a few smiles here and there, but not her base line.
My sister, Jerri and her daughter, Samantha, brought Mackenzie down yesterday. They stayed 24 hours and went back home...Mackenzie stayed with me. I woke this morning to see my two girls snuggled up together. I was in heaven. We have had so much fun. We went to the butterfly house, Mackenzie loves butterflies, it was her theme for her school year. Today, we went to clinic and Ashleigh had a check up and Mackenzie and I was painted...yes, painted. Sue, our N/P, asked us if we would be interested in having our exposed skin painted bright colors and have our pictures taking for her daughters school project. Mackenzie was sparkle purple and I was extemely bright pink. We were going to paint Ashleigh but her skin is extemely sensitive and she has a bit of graft vs. host on her face so we didn't think we should. There are some great and crazy pictures...I will post them, when I get them...Promise!
Mackenzie and I have a date tomorrow night, we are going to dinner and Kelly (Angel David's mommy and Hunters Hope Family Support)is going to watch Ashleigh.
I will update after clinic...it is a wonderful week with Mackenzie here. Ashleigh hopefully is on the right path. Howard is settled into his location. I am adjusting, still crying alot, but getting better!
Okay, two very important fund raisers coming up that mean alot to us...
We are builing team Ashleigh...several friends and family members are traveling to Duke on May 6th to do the Rainbow of Hero's walk in honor of Ashleigh's struggles and the hope that Duke has given not only Ashleigh but so many children. The money goes to the Family Support at Duke, helping pay for parking passes, meals, sibling parties and much more...We ask for your support of Team Ashleigh! If you are interested in making a donation in Ashleigh's honor please contact me or go to www.rainbowofheroeswalk.org.
The second is a 5K run that the New Jersey National Guard is going for our family. It will be held in Sea Girt, New Jersey on May 20th. For details for this fundraiser can be found at www.nutterrun.com. We are hoping this event can spread awareness about Krabbe and the need for newborn screening for treatable diseases!
Thursday, April 6, 2006 7:46 PM CDT
The long awaited update...I am so sorry for taking so long. Thank you for the emails and private messages checking in on us. So many of you have stood up to support our family and we appreciate each of you and thank you for taking the time to think, pray and check on our family...
Ashleigh is a roller coaster...Sue, our N/P here at Duke said she feels like she is in the woods and her flashlight is not working...leaving her in the dark. It is a scary thing when Dr. K and Sue are scratching their heads.
Ashleigh was doing better. We were still having some chemistry problems and diarhea but they were improving. She has increased sleepiness. We thought it was because she was digesting her medications better so we lowered the doses...it helped for a few days, but it is back. She has been shaking her right hand for two days...leading us to think her seizures are not under control and that is what is causing the increased sleeping and shaking. She has had a few days of low grade fevers and has a staph infection on her skin around her port and g-tube. We can not keep her accessed because of the risk of the infection getting into the blood. We had to stop her IV fluids, which means we had to increase her fluid intake. We are trying different formulas. Thinking about switching seizures medications to a new one on the market, that does not cause sedation or diarhea. Honestly, Ashleigh was doing great, smiling, holding her head up, turning her head to kiss me when I ask her to, and laughing...we get the most beautiful days from her then we have the days that she is crying or sleeping, requiring suctioning and oxygen. She is on many new medications, including an antibiotic...which could cause her stomach to have more difficulties, but we could not take the chance of the infection entering her blood stream. There is no sign of relief for her. I wish I could explain the good days, how beautiful she looks, how much fun she has. Then the days sneak in that I am not sure if we will get through.
I can not say much, but for those of you who have asked, Howard has deployed. If you would like to email him or send him mail, please email me and I will forward you contact information for him. We miss him so much, he sends the most loving emails telling me how much his family means to him...and all the things we have to look forward to including Ashleigh's healing.
My friend, Colleen brought Mackenzie down to see me two weeks ago and my sister is bringing her down on Saturday. Mackenzie is going to stay with me until after Easter and then my friend Sarah, who is flying down to spend Easter with us will take her back home for school. I am so blessed with such a wonderful little girl...she takes all of this so well...considering...
Mackenzie won an award at school, she is so proud of herself. This is the second one that she has won!
Kelly Brown (mother of Angel David and Hunter's Hope employee) has been a huge help. She has been watching Ashleigh for me, having dinner with me and going to the store for me...oh, and she is my movie rental store also!
I don't know what I would do without her...before I always had Howard driving back and forth. Oh, I pumped gas! In New Jersey, you are not allowed to pump your own gas (and our gas is cheaper!), all the times I lived down here...Howard would fill my truck up before he left to go home...so, I had to do it myself...lets just say it was very funny!
Some of you know that I have looked into planning Ashleigh's funeral...not because I am giving up, not because I think she is going to die soon, simply because I think about how perfect I would want it to be and I don't want 48 hours to plan the last thing I can do for her...I have picked the flowers and I have been looking into some readings, poems and music that I would want...including books that she likes. I want it to be a celebration of her. So I ask that if you have any poems or writings that you would like to share, please forward them to me. I know some are going to look at this as giving up...by all means we are not and will not until Ashleigh tells us she is ready to fly. But reality is that Ashleigh has a terminal disease and she had an experimental treatment. I belief that treatment helped us give Ashleigh a better life, but her life here on earth is between her and God. Like we tell Mackenzie..Ashleigh has a boo-boo in her brain and the doctors work very hard to make her better...if they can't God will take her to heaven and she will be healed...running, playing, singing and doing all the things that her earthly body does not allow her to do. Please don't judge our choice to plan her last celebration...I just need to ease my mind of it and know that I did the best I could for her. There are amazing things on the horizon...things that can give Ashleigh a brighter future. We hold the HOPE of future science giving Ashleigh the skills though healing on earth.
Okay, two very important fund raisers coming up that mean alot to us...
We are builing team Ashleigh...several friends and family members are traveling to Duke on May 6th to do the Rainbow of Hero's walk in honor of Ashleigh's struggles and the hope that Duke has given not only Ashleigh but so many children. The money goes to the Family Support at Duke, helping pay for parking passes, meals, sibling parties and much more...We ask for your support of Team Ashleigh! If you are interested in making a donation in Ashleigh's honor please contact me or go to www.rainbowofheroeswalk.org.
The second is a 5K run that the New Jersey National Guard is going for our family. It will be held in Sea Girt, New Jersey on May 20th. For details for this fundraiser can be found at www.nutterrun.com. We are hoping this event can spread awareness about Krabbe and the need for newborn screening for treatable diseases!
We are going to clinic tomorrow...hopefully, I have some good news. Mackenzie will be here saturday...I can't wait to see her!
Tuesday, March 21, 2006 5:33 PM CST
Where do I begin...
Ashleigh is still having bloody diarhea. She has cried most of the day. We took a few medications away...but added another! We are looking into other things that can be going on with her. Her blood work is all over the place.
Mackenzie is coming tomorrow! I can't wait to see her. I really need her right now.
The army denied Howard's request. He leaves Thursday for the Middle East.
I am tired and drained, both physically and emotionally. I will try to write more later.
Please if you have not...read the last post. I love the poem/story that was posted.
With HOPE...
Sunday, March 19, 2006 4:02 PM CST
Ashleigh was discharged from the hospital on March 7th, she is doing better. She still has many issues that we are trying to get under control...she is not tolerating her feeds (she is on 1/2 strength feeds with a new formula), she is still in pain at times (being controlled with tylenol and heating pads, we are doing everything we can not to increase the methadone anymore), her drug levels have been low (FK506 and Zonegran were both increased, again) and our biggest concern is the diarhea that continues. Ashleigh has at least 8-10 dirty diapers a day. She continues on IV fluids to help her with dehydration for 12 hours every night. She has had a few days with low grade fevers. Some days she cries all day and others she is happy and smiling. We are still doing daily labs because her potassium, phosphorus, magnesium, cardon dioxide, and nitrogen have all been low. She has received magnesium once, phosphorus and potassium twice and we have doubled her bicitra because her cardon dioxide was so low. Ashleigh has not tested positive for any infections. Mostly, this is repairing the damage from too many antibiotics for long periods of time. We discontinued the bactrim last week, leucovorin will come off this week. We are hoping to lower her Ativan back down to her regular doses soon. We are also hoping to discontinue the latinex and flagyl soon. For now, it looks like we are heading in the right direction...we should be heading home in about 2-3 weeks. Ashleigh had a MRI of her hips, it did show they are dislocated about 30 percent. I am going to take the films to our doctor at home for him to look at them. I like this doctor alot and if he thinks she is still in need of the surgery, we will do it up there with him.
Howard left to go back to Mississippi. He is requesting a temporary duty station in New Jersey until we are able to bring Ashleigh home. Mackenzie is having a bit of trouble so we want to make this as easy as possible for her. When Ashleigh was first diagnosed Mackenzie saw "monsters". She went for "play time" with a doctor down here, who gave us ways to chase the monsters away. Well, apparently they are back. She was playing at her friends house and she saw him...he is green with red eyes. He is not there to hurt her, just to watch her. During this time of seeing the monster, Mackenzie's friend accidently scared Mackenzie and that is how the monster was revealed to grown ups. We are hoping that if the Army will give Howard the temporary assignment then being with him and being able to visit me more will help her through this. We are also going to get her in therapy at home. It can not be easy on her to have a sister so sick, a mom who goes away with the sister all the time and a father headed to war. People have been so good to her, she has been with her mom-mom, her aunts, and her friend Danielle's family through out this, but she really needs to be stable. Howard's mom brought her down two weeks ago for a few days and my friend Colleen and her daughter Amanda are bringing her down this week. She really needs her parents right now...it crushes my heart that I can't be with her right now.
The New Jersey Army National Guard is doing a 5K run for our family on May 20th...for more information go to nutterrun.com
I also received this email yesterday and I wanted to share it with you...I thank all of you who have been touched by Ashleigh. We are so proud of her...
Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however, the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, "Why do bad things happen, why is there suffering in the world?".
God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in peoples hearts". The little soul was confused. "What do you mean", she asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences, and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.
The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this-it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer-to unlock this love-to create this miracle-for the good of all humanity.
Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into this world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!
God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. You will be called Ashleigh.
God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.
Thus at that moment the brave little soul was born into the world, and through her suffering and God's strength she unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys-some regained lost faith-many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives were changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.
Thank you for your love and support, for loving your families, for hugging your children, thank you for your friendships. Thank you for all that you do and for loving Ashleigh. Lives have changed, life is good, peace and love is in our hearts. Ashleigh is our miracle. Thank you, God.
Monday, March 6, 2006 11:01 AM CST
Okay, so the ultra sound went well...her gall bladder, liver, stomach, and kidneys all look okay.
The conclusion is that after months of strong antibiotics and so many different ones being pushed into her, her gut broke down, basically she has mucusitis in the gut. It has to heal itself and it will take sometime for that to happen.
We may be discharged from the hospital to an apartment today or tomorrow. They are setting up the supplies to sent to the apartment. We will be doing IV fluids, IV infusions for several medications (some of Ashleigh's oral meds were switched to give her belly a little rest), and the feeding pump and her other oral meds that couldn't be switched over. We will also have to weigh her diapers, check them for blood and keep track of her fluid intake and output each day. Oh, we will draw blood every morning and drop it off at the lab. The clinic will get the results. We will also go to clinic everyday to have Ashleigh checked out and make sure she is getting the fluid she needs and her weight is good. I feel like we are back two years ago...blood, labs, IV infusions, clinic everyday...
A teacher came over to start Ashleigh up in school and we will have therapy a the apartment. If this becomes long term, I will have to figure out what do about Mackenzie and her finishing the school year at home then moving down here. Right now, Howard's mom has been getting her back and forth to school, her friend Danielle's family has been doing things with her and my sisters have been helping on weekends. Cute Mackenzie story to share with you...
She said she missed me and she wishes that we could be at the hospital near home. I told her that they could not fix Ashleigh there so we came her for Dr. Kurtzberg to fix Ashleigh all up...her response was "Oh, Dr. K saw this before in other kids" I said yes, she said "Oh, so Dr. K doesn't even need to figure out the problem, she already knows what is wrong and how to fix it" I said yes, that was right. She said "Dr. K always makes my sister all better" I said "yes, she does, doesn't she" Mackenzie said "Dr. K is so smart" I said " she sure is" Mackenzie said "So am I" I said "you sure are"
Saturday, March 4, 2006 9:18 AM CST
Update Sunday morning...
Ashleigh CT scan results show that Ashleigh's gall bladder is desended and recommended getting a ultrasound. We went down this morning, they also took a few "extra" pictures of her liver. We do not know the results yet...waiting for the doctor on service to come by, Dr. Kurtzberg said she will most likely stop by today also. Ashleigh is having trouble with low heart rates today...
We will update when we know more...
Where do we begin...
Wednesday morning, our wonderful nurses from duPont prepared Ashleigh for transport. We were taken by ambulance to New Castle Airport, along with two transport nurses. When we arrived at the airport, there was another transport nurse and two pilots waiting for us. We went down on a medical airplane. It took us 55 minutes of airtime. We landed at Raleigh Durham Airport, then was taken by ambulance to Duke. Our transport nurses from duPont took us up to our room at Duke. They were great to us, during such a stressful time. It took 2 to 2 1/2 hours from the time we left duPont to the time we were in our room at Duke.
Our nurse practitioner, Sue and the one on service, Ann came up within 10 minutes of Ashleigh being in the room. They thought Ashleigh looked good. They changed a bunch of medications around...
Dicontinued all antibiotics and antifungal medications except Bactrim. They increased her Bicitra, doubled it! Started her on the bacteria that is in yogurt to replace all the good bacteria in the digestive system. They ordered x-rays and blood work. All the x-rays are normal. Ashleigh blood work is not terrible, but not at her baseline.
Dr. Kurtzberg came up later that night. She thinks Ashleigh looks good. She is not sure why she is having trouble every night at 10 pm, which she did the two nights we were here (so Meagan it wasn't you!;-)). Dr. Kurtzberg thinks Ashleigh received so many very strong antibiotics over the last month that it irritated her gut. We are waiting to see the CAT scan results to tell us if there is anything more serious going on.
All stool and blood cultures remain negative. No fevers, so they think they were brought on by the antibiotics. Very little suctioning needed. Dr. Kurtzberg thinks we should be able to go outpatient by Monday but remain the in Durham area for a few weeks to clear up some of the issues and make sure Ashleigh is going to remain stable before heading home.
Our main issue remains to be that Ashleigh can not tolerate anything in her belly. We are trying 30cc (1 ounce) of pedialyte every 3 hours and she is in pain and crying within an hour of receiving it. It looks like Ashleigh may have to go on TPN, until we clear up the digestive system.
Ashleigh also had an EEG, the results were what we expected...spikes of focal seizures of the bi-frontal and bi-temporal areas of the brain.
Dr.Kurtzberg stressed that Ashleigh looks well, but this has only been a few days...things can change as they did often at duPont.
Last night, Dr. Kurtzberg came up on her way home, around 9 pm. She again said Ashleigh is doing well but thinks we need to procede with caution. Select our test carefully so we do not put Ashleigh through too much at once but we get the answers we are looking for. She also commented on how much Ashleigh is moving and interacting. Of course, Ashleigh was doing great while Dr. K was in the room, however 40 minutes after Dr. Kurtzberg left, Ashleigh was screaming in pain from her feed.
Oh, on Thursday, Ashleigh had extremely low blood pressures and they had to give her extra fluids to bring it up. Dr. Kurtzberg, Sue and Dr. Martin (the attending that is on right now) were in that night and Ashleigh was doing well...less than an hour after they left, she had a seizure. Thank God the nurses and aid were here to witness it, I sometimes feel like Ashleigh is trying to make me look crazy!
Well our room number is 919-681-5112. We should only be here a few more days (as long as no one mentions the word HOME to Ashleigh) before moving to our apartment. We will be staying at Alexan Farms, the building next to the Hunters Hope Home, where Daphne (9 year old from South Africa with Krabbe) and her family will be staying.
I also wanted to thank some pretty great people...the nurses at duPont, the transport team, of course Ashleigh's great team of doctors, my Bennigan girls, my mother in law for her help with Mackenzie, the Brown family, Colleen and Sarah, Kelly Brown (who was at the Duke with dinner and her never ending support for me the night we landed), Ken, Chris and Erin a zillion thank yous for all that you do for my family, James and the entire 2006 NJANG OCS class for your dedication to Ashleigh and our family, Pam, Debbie, Jane, and Amanda your friendship is priceless. Greg for the call from Iraq, all of you for your emails, messages, phone calls and prayers that keep us focused on what is important here...ASHLEIGH.
We have been very blessed with wonderful people in our lives and we appreciate each of you for everything you are and all that you do...THANK YOU!
Love to you all...
Tuesday, February 28, 2006 10:32 PM CST
I am updating for Michelle. I don't think she will have the time. As of tonight Ashleigh and Michelle will be air lifted to Duke tommorrow.So please keep sending the prays for our sweet little princess Ashleigh. As soon as we get more information we will update.
Thank you for all your support and prayers!!
Howard
Monday, February 27, 2006 0:33 AM CST
Below I listed all of the positive cultures for Ashleigh...I missed one
Stenotrophomonas Maltophilia (bacterial, found in her Sputum)
Sorry for taking so long to update. We have been extremely busy here. Ashleigh remains in the hospital.
She has some wonderful days and gets sick again, quick.
Currently she is on IV fluids, she is not tolerating her feeds at all. She required oxygen, suctioning and had a high fever again today.
I am not sure how to explain what is happening here so I thought the best way would be to tell you all the positive test results and the added medications....
Two dislocated hips, they will require surgery in a April or May.
Entercoccus (bacterial, found in her sputum)
Candida Lusitaniae (fungal, found in her sputum)
Pseudomonas Aeurginosa Strain 1 (bacterial, found in sputum)
Pseudomonas Aeurginosa Strain 2 (bacterial, found in sputum)
Candida Lusitaniae (fungal, found in stools)
Our main concern is the fungal infections, we know it traveled her digestive system. She also is passing a good deal of blood through her stools, both dark and fresh. A CT Scan told us that her bowel is very irritated, she has now been diagnosed with Colitis. We are still waiting for blood cultures to tell us if the Candida Lusitaniae has entered the blood. We have been told by several doctors that that would be the worse blood infection for Ashleigh to contact.
Ashleigh is currently taking Zosyn, Bactrim, Leucovorin, Flagyl, and Fluconizole. We also increased her hydrocortisone, Ativan, Topamax and Methadone. Ashleigh also was on Amphotericin and Fentanyl for a few days,
Last week, she has a new central line placed, so they gave her Fentanyl for the pain. For those of you who have either traveled the transplant path or have followed us since the beginning may remember the Amphotericin...it is also referred to as AmphoTERRIBLE or Shake and Bake because the side effects are so bad...shakes and high fevers. They pre-med Ashleigh with tylenol, benadryl, and steroids. They also had a order for Demoral on stand by just in case Ashleigh had shaking from the Amphotericin. Ashleigh did well, after the infusion she had high blood pressure for an hour.
We are waiting for the blood results to come in, that will tell us exactly how sick Ashleigh is... until we hear more,please continue to pray for her. For peace and healing...
We are on 5 weeks in the hospital.
Mackenzie made a new friend at the hospital. Her name is Alexa Bailey, she is transferring to CHOP for a bone marrow transplant. Please pray for this beautiful little girl and her family. Mackenzie is an amazing little girl and was very sad her friend left the hospital until she realized Alexa left because she is doing "better".
I would also like to thank all the nurses on 3A, the bone marrow unit here at DuPont, for taking such good care of Ashleigh and our family.
I am sorry this is not my normal update, I am drained emotionally and physically...we had a meeting with a team of doctors and they said they were not sure if Ashleigh would make it though the port surgery because of all the issues she is having with her airway. I looked at each of them and told tham that what they do is giving Ashleigh the best quality of life we can...it would not matter if she is on the operating table or in my arms...if she and God decide it is her time to go...then she would earn her wings and fly. Some ask how I can be so comfortable with the idea that my baby girl will one day leave me...first, it is not easy to even think of, I can not imagine my life without her, but I hold close to my heart that she will be free to run and play, dance and sing...she will talk and walk in Heaven with all of the other children who went too young. I have to believe this, because I would be more controlling about her health then I already am. God and Ashleigh will know when it is time, until then I will fight for her comfort, health, and give her as much love and happiness as I can.
Thank you for your emails, messages, phone calls, visits and most of all your prayers! Please keep them all coming!!
Love to you all...
Please pray for Ashleigh and all the families who work so hard to give their children the best we can...
Tuesday, February 14, 2006 9:04 PM CST
I am SO sorry for taking so long to update.
Ashleigh is still in the hospital. We are not sure what is going on....to make a long story as short as possible, Ashleigh has two different types of bacteria in her airway, seizures and aspiration pneumonia. She is currently on 2 IV antibiotics, 3 oral antibiotics, 1 antibiotic through a breathing treatment and a couple of medications to protect her from the antibiotics. She also restarted IVIG for protection through the winter. Ashleigh is basically on her last vein, they have stuck her so many times that they have blown. If she continues to require infusions and she looses this line, she will most likely have to go to PICU for a A-line, which will require close supervision.
Ashleigh's heart rate has been anywhere from 38 to 167. Her temps are 38.7. Her oxygen has been as low as the 60's, but is now stable without oxygen! Her repirtory rate has been anywhere from 12 to 43. EEG did show she is not in constant seizures. Her white cells continue to climb.
She also has two dislocated hips, that will require surgery. However, she can not have surgery until she is infection free...plus all her doctors must sign off because it will be a 3-4 hour surgery. We are hoping to go to surgery by mid to the end of April.
Her right knee is slightly larger, with a bruise like mark on it...all test have been negative. We are going to meet with the orthopedic to talk about the surgery and he will examine her knee farther. It is not infected.
Howard is still home, the military wants him back by mid-March. We really are thankful for the insurance company, TriCare and that Howard's commanders have been generous with the time that they have allowed him to be home.
We had a terrible attending, who withheld information and test results from us and Dr.Kurtzberg...mainly that Ashleigh tested positive for a second bacteria that took him 10 days to decide to treat, then started her on too low of a dose to treat it. He also took his time with other, issues, like taking almost 20 hours to let us know that her hips were dislocated and still did not call orthopedics. Oh, the only reason he knew they were dislocated was because the LUNG doctor requested them to be checked. His failure to treat Ashleigh, made us go to Patient Relations about him and file a formal complant with the hospital. We have great doctors, two great hospitals...this one doctor...there just are not words to discribe him...Frustrating!
Please pray for sweet Ashleigh, for peace and comfort, for healing and pain free, for life.
Saturday, January 28, 2006 2:44 PM CST
Not really sure where to start...this is going to be a long...
We went to Duke last week...Ashleigh of course, looked and acted wonderful. Friday we saw Sue (NP) then headed to MRI. They sedated Ashleigh and just as we put her on the machine, she started to have seizures. She came out of th seizures and had the MRI done, then Sue did a LP (spinal tap) on her. Both test came back as stable and there was no sign of disease progression. We met with Dr. Kurtzberg and Dr. Escolar, they thought Ashleigh was stable an there was no reason for us to think Ashleigh's status has changed, basically saying yes, she has a terminal illness but she is not progressing and we are not looking at losing her within the next few months...we made some medication changes and left.
We met with some Krabbe families for dinner and then headed home on Saturday...
Monday, Ashleigh saw the lung doctor. He recommended the Bi-Pap and said we would set it up for home...he thought Ashleigh looked great and her lungs we moving air good.
Tuesday, Ashleigh had two episodes of low saturations and very high heart rates, both cleared fine...
Wednesday, Ashleigh was extremely junky and having alot of problems with her heart rate, oxygen level and her chest was working very hard to breathe. It was not clearing up so we headed to the ER. She was taken right to Truama and we prepared to have her placed on a vent. She managed to avoid it but she was on 9 liters of oxygen and was having trouble waking up. After much talk and a ton of exams, Ashleigh woke herself up, missing a trip to PICU. She continued to have difficulty with sleeping, seizures and extremely low blood pressure through the night.
Thursday, worse day I can ever recall for Ashleigh. The doctors felt since she was so unstable, I should call for Howard to return to New Jersey. I called the Red Cross and they contact the commanders of his mission and he was sent home. That is how all military is called home...through the Red Cross. The Red Cross and Howard's commanders were very kind and senstive to the situation. Ashleigh continued to have a difficult time throught the day with extremely low blood pressure.
For those transplant families, they were looking for EBV, CMV, GvHD, PCP and several other bad infections. Nothing has been confirmed yet, except she has extremely full lungs.
On five antibiotics and very high doses of steriods
Friday, she seems better more stable, but still having some issues. We are still looking for the cause of her problems. Different doctors have different opinions...
Saturday, awake and alert, holding her vitals up, still on
oxygen and having a some episodes of low saturations...
Still staying out of PICU, still praying...
I have seen Ashleigh in some pretty bad situations, never did I feel as I did when I sat in the ER...it was quiet, the crash cart next to her bed...just in case...she was on an oxygen mask and IV...her little chest was working so hard to breathe. I sat a cried as I thought that she never looked so bad...I asked God to have mercy and if He were to take her to heaven, please do it fast and painless. I asked the doctors not to intervene with her heart, if it stopped, I did not want them to shock her or give her heart meds. I just wanted to hold her as she was flying free. Howard and I have since signed a partial DNR. This is and always has been about what is best for Ashleigh...
I am not sure what Ashleigh's future holds, but I do know that I am blessed to have her as my daughter...
Please pray
Tuesday, January 17, 2006 7:14 PM CST
There has been a change of plans.
I received a call from Duke today, Ashleigh is scheduled for a MRI on Friday morning and we will be meeting with Dr. Kurtzberg, Sue and Dr. Escolar (developmental doctor from the University of North Carolina) on Friday afternoon.
I will have more information after the testing, for now can you PLEASE PRAY that this meeting brings good news.
Monday, January 16, 2006 8:39 AM CST
After many tears and much thought, we have decided not to go to Duke for the MRI early. At this point the MRI will not make a difference in how we treat Ashleigh, so we will keep out plans to go to Duke at the end of February...she will then have all her regular test. Dr. Kurtzberg said it was up to us if we wanted to come early...at this point it just wouldn't change anything.
We are setting up a Bi-Pap machine to help Ashleigh breath at night. For those of you who do not know what this machine does...it is basically a oxygen mask that has pressure behind it, forcing air into the lungs, opening up her "floppy" airway. We are hoping that by doing this at night, Ashleigh will receive better sleep, giving her more energy to keep her airway open during the day.
We also talked about the possiblity that this all may be weather related. At first, Duke did not think that was a possiblity, one of our doctors at duPont brought up the idea. We are grabbing at any possible HOPE we can find. Duke is more open to the idea since we pointed out that this was our first winter in New Jersey since Ashleigh's diagnoses. The last two we were in North Carolina for treatment.
Ashleigh has been doing well, she looks good, smiles and laughs...responds to Mackenzie's voice and being nice to her nurses. She is starting new therapist, so she likes to tease them a bit...
Mackenzie has been having headaches a bit, of course, I panic after a few weeks of her complaining about them and scheduled an appointment with Dr.Renwick. She did a complete neuro exam for me (my imagination was going wild). Of course, she is fine and my fears were put to rest...Dr. Renwick feels the headaches are being caused by stress. My six year old is so stressed she is having headaches...how terrible is that. How do I make this all easier on her? Not only seeing Ashleigh struggle everyday but having Howard deploy.
Howard is doing well. He is tired, busy and struggling with the emotions of Ashleigh...and being away. We are planning a trip to Mississippi to see Howard in March. Angel Flight has offered to take us down so Ashleigh can be with her daddy. We are excited. I am also hoping to meet another Krabbe child that lives down there while we are there.
Emotionally, I am drained. I went to the ENT appointment to have Ashleigh's tonsils and adnoids removed, never did I think we would be talking about bi-pap and trachs. Wednesday was terrible...it was the sufficating feeling that I had when Ashleigh was being diagnosed. As if the weeks was not bad enough, I had to have the dog put to sleep because of liver failure. I am tired, drained and worn.
Please continue to pray for Ashleigh and all of the children who have these terrible diseases...and the families who have to make these difficult choices. Also please say a prayer for Isabelle Sharon Ferris, born last Wednesday to Howard's sister. A healthy baby girl at 7lbs10oz. May God Bless this child with health and love.
Thursday, January 12, 2006 1:36 AM CST
After many tears and heart breaking choices, I felt the only thing left for us to do was to come here and ask those of you who still come here to pray. Please pray for our dear sweet daughter...as you always have.
Ashleigh's sleep study results came back and we were sent to ENT, thinking since there was such a large amount of apnea caused by obstruction removing her adnoids and tonsils would help Ashleigh's breathing. She had 121 episodes in 8 hours of sleep. ENT sent Ashleigh for an xray, the results were not what we hoped.
Ashleigh's tonsils and adnoids are normal size, they are not causing her blockage. They feel that Ashleigh's tone in her airway has decreased causing her airway to cause the blockage. I know that doesn't sound that bad however these are the choices we have been given.
We can put Ashleigh on a bi-pap at night to help her. However, she is doing this during the day also, causing her to snore even when she is awake. She can not be on bi-pap for that long of time without coming off. The other issue is that Ashleigh is not releasing enough carbon dioxide, expelling enough poisonous air.
Our other choice would be inserting a tube in Ashleigh neck to pass over the airway, causing her to become somewhat dependant on a machine to breathe at most times, allowing her to come off at other.
I will update more after we talk to Duke more...
Michelle
Friday, December 23, 2005 5:26 AM CST
We are headed to GI to see what is causing Ashleigh to have so much difficulty with her feeds. She fills with secretions after she eats or starts retching during her feed.
We are heading to ENT! This is good news. Her sleep study did show obstruction (apparently they person who told me there wasn't was not trained to completely read the results). She most likely will have a CAT scan to see what the cause is, then have them removed. YEAH! It did show a little was caused by Krabbe but not as much as we thought.
She is still having a difficult time but hopefully it will pass soon...
Howard comes home tonight, we are so excited. The airlines is letting us pick him up at the gate. Thank you, Carl and Amanda for the information about that.
Merry Christmas to all of you. I hope you have a wonderful time with the people you treasure. May your New Year bring you joy and happiness...
Please remember the sweet Angels who will be celebrating Jesus's birthday with him this year. What a celebration it must be...
God Bless.
Sunday, December 18, 2005 1:38 AM CST
For weeks Ashleigh has had trouble with her temperature, secretions and oxygen. Well, they continue to give her problems so Dr. Kurtzberg wants us to start her on Levaquin, a very strong antibiotic that she will take for three weeks. If we see improvement we will continue the Levaquin for another three weeks, giving her six weeks of coverage. If we do not see improvement, Dr. K thinks we should start looking for an infection that is sticking somewhere. We will do a bone scan and an echo, looking for bacteria sticking to the bones, joints and heart valves. If this comes up clear and Ashleigh is still having fevers will have to say this is Krabbe related and caused by central nervous system damage.
We go to Duke in February for another MRI, please pray.
Merry Christmas.
Thursday, December 15, 2005 9:02 PM CST
Ashleigh had a sleep study last night. She performed well, with her oxygen dropping several times throughout the night, down to the low 80's.
The firt reading of the test was not what I was hoping. I was praying it would be a gland issue and surgery would take it away. Instead, it was central nervous system damage. Basically, her brain forgets to tell her to breathe. We are waiting for the final report to find out how severe it is. Most people have this, Ashleigh's is just worse than what the average person has. The medical word for what "healthy" people do is called Sleep Apnea. We will see how Ashleigh's is diagnosed and how much we need to worry about it.
For those of you who follow the Krabbe world, you may know that "the brain forgetting to tell the body to breathe" is a common cause of the death for many children. Please pray for Ashleigh that this is not the case, and she has the average amount of sleep apnea.
Thursday, December 8, 2005 11:06 PM CST
I don't think I have ever gone this long without updating. I am so very sorry. Part of it is that I have been so busy, the other part is that I am just not in a good place.
Ashleigh has been having such a difficult time. She had strep throat (twice). The second time she also tested positive for three other infections in her mouth. She has been full of secretions and requiring alot of care. The military gave us a nurse to help, I wonder how I was able to get everything done without her! We have been back and forth to the hospital several times over the past month, a few times, I thought she would be in PICU. It has been hard lately...I think emotionally it is harder because Howard is not here with me. We miss him so much. Ashleigh has had fevers for weeks now that we can not find the source of, she has terrible skin breakdown on her hands, she has had wonderful days full of smiles and happiness, then within moments she is gray and requiring suction and oxygen. I don't know what is going on but hopefully it has passed.
Ashleigh has been doing better the last two days. She was fitted for a new wheelchair today, I can't wait. Her old chair does not fit her at all. She looks terrible in it. Her new one is called Razzleberry, it is shiney purple, with a black seat and her name on it in purple! Very fancy!
She also saw Dr. Amy, we are going to try to wean Methadone next week. We are going to give her a few more days to make sure she is feeling okay first! Yeah!, that is a drug that I have always hated Ashleigh being on. I would love to get rid of it.
We saw Dr. Falchek today also, he is the neurologist who diagnosed Ashleigh. We have had terrible experiences with neuro, so I was very nervous about going...well, it was just what I needed. He was so wonderful. He said that he would go by what Ashleigh is doing and ignore the MRI, he thought her last EEG looked much better, he was impressed by her skills and said she has done wonderful, even saying that we are all terminal "none of us are leaving this earth alive" and he would NOT consider Ashleigh terminal! Yes, neuro said that!! I so needed to hear this. Lately, I have been so convinced that I am loosing her, that I started planning her funeral. I am so angery with myself. It is not acceptible for me to give up hope, when it is all she has! In my heart, I believe Ashleigh will continue to gain skills and amaze us all, my mind has been in other places and I am happy to say...with the help of several people, I am focusing on Ashleigh's total healing.
I received an email from a dear friend that said she knows the deaths of these children affect me hard, God knows how each of them tears me apart, but she also said that I have to remember, they are not Ashleigh and Ashleigh is right here with me. Thank you, my dear friend. I could never express how much you and your family means to me.
Mackenzie got her first report card, she was above average on everything except money skills. How funny is that?! Can she be my daughter, she hates shopping and she is "average" with her money skills. We were in a store a few weeks ago and she kept saying that "daddy" did not want me to buy anymore things that I needed to be done! He has brainwashed her against shopping. She is doing so well with her school work. She is having a very hard time with Howard being gone, not a day goes by that she does not cry for him at least once. I am looking into getting her counseling for many issues. Some, are just normal 6 year old, school girl things. Fresh mouth and not listening but with Howard being gone and Ashleigh being sick, I don't want her lost in all of this. I think too much is expected out of her sometimes and we all need to remember her age. She has been saying things like if she was sick everyone would love her more and I would spend more time with her. She no longer wants to do some of her favorite things or be with her favorite people. She just wants to be home with me. She continues be wonderful to Ashleigh, helping with her care and singing to her. For being 6, she handles things better than some adults, but I worry about her so much.
Howard is doing okay, he has a list of food he wants when he gets home! I can't wait to see him. I know Ashleigh can't wait to snuggle with her daddy and Mackenzie is already plotting with him to tickle me! We are going to have such a wonderful time when he gets home. The National Guard contacted me about doing a nationwide article about Ashleigh, imagine the attention it would give Krabbe and the need for Newborn Screening. It will only be in military papers but the more people hear about it, the more people talk, the more people get involved, the better future children can have!
I really will do my best to update better.
Oh, if you notice in our history, CB lost most of our entries, they are trying to find them, but there are a bunch from someone elses website.
Dr. Falchek also told me that he diagnosed a child with MLD this week, he is sending them to Duke for transplant. They are waiting for the test results for the child's siblings. He said he told them, without names about Ashleigh and our experience with Duke. I asked him to please release our information to them. I ask you to please pray for this family.
God received another special angel, Elijah Kurtz became an angel. Eli had Leigh's Disease, he is now free and I can just imagine his sweet body running and playing football with all the other angels. God Bless you sweet Eli.
Dr. Krivit has also passes away. He was a transplant and research doctor at the University of Minnesota. He has joined the many children that he tried so desperately to save from their diseases, only now they are all free and healthy. Our thoughts and prayers are with the Kurtz and Krivit families during these difficult times.
caringbridge.org/co/elijahkurtz
Tuesday, November 15, 2005 3:37 AM CST
I wrote another entry, but I decided I didn't want to use it...it is in journal history if you would like it.
I just wanted to tell you all that 3 years ago today, Howard and I were blessed with an amazing little girl. She has touched so many people and we are very proud to be her parents. Thank you Ashleigh Ryann for coming to us, for allowing us to be your parents. Thank you for the love and hope that you give and most of all, thank you Ashleigh for being the beautiful princess that you are.
Happy Birthday, sweet Ashleigh Ryann. We love you.
Tuesday, November 15, 2005 1:48 AM CST
Ashleigh had an extemely difficult weekend. I can say now, I should have taken her into the hospital. I really should have used better judgement. Ashleigh's heart rate was extremely high for long periods of time, her oxygen was low, even with oxygen on. Her temp was very high. I managed it all at home with treating each symptom as it appeared. Yesterday, Ashleigh was taken in to see Dr. Amy. She had blood work, cultures, x-rays and a visit...well a rapid test came back positive for Strep Throat. Ashleigh is 10 days of antibiotics and I feel like the WME (worst mommy ever). Yesterday was much better, she did cry most of the day. Hopefully she will feel better today. We also talked to Amy about Ashleigh seeing a pulminary doc. We may do another sleep study because of some weird breathing patterns. We may have to consider our options for treating sleep apnea. Ashleigh had a very minor case of if a year and a half ago, but we are afraid it has gotten worse. We are also waiting to get into surgery as soon as we can get her healthy enough. Busy days...
HAPPY BIRTHDAY ASHLEIGH RYANN GWIN! MOMMY, DADDY AND MACKENZIE LOVE YOU MORE THAN WORDS COULD EVER EXPRESS!
As many of our long time followers know, these days tend to be a little more emotional than others.
This will be Ashleigh's first birthday celebration in New Jersey, we were in North Carolina for the other two. How I love being there, in the quiet of our apartment, in the security of Duke, the comfort of being with families that travel this journey next to us. Yet, the joy of being with our family and friends, our own home, our home medical team, our fellow travelers a call or email away...
I read over Ashleigh's past year, so much pain and suffering wrapped in hope and joy. I know it does not make sense, but it is her life. I am not sure how to celebrate her day without tears. I still have not come to terms with all the dreams that we had for Ashleigh being taken by Krabbe. I constantly ask WHY?, I pray that if everything happens for a reason, that God reveal the reason to me. Let me know why my baby can't talk, why she can't run and play, why she can't taste her birthday cake? In reality, I know that answer may never come to me but today, I need to ask why she can't blow out her birthday candles, why I must pump her full of medications, what could possibly be the reason for so much suffering by a child. We will be celebrating Ashleigh's day with some of the most special people in our lives, yet Ashleigh will miss her daddy holding her as we sing happy birthday to her. I will tell you today, I am sad and mad, yet happy and joyful. For all the things Ashleigh does not have, there are so many that she does. She has HOPE, joy and life. There is a treatment that may become available within the next year that shows promise in helping Ashleigh better heal. We hold onto the HOPE that this treatment may offer Ashleigh.
We have met some incredible people through this journey, all regular parents, united together with the common goal of giving their children the best they can. Some I only know through the computer, others I talk to on the phone, some I see in therapy, some at clinic, some I have sat up with all night crying with, some I have shared the most intimate parts of my heart with, some of their journey's have ended, some have just begun, but we stand united on this front. I thank each of them for the gift they have given to our travels, as if it were fuel in a car...you have inspired me, given me hope when I thought there wasn't any, the energy to keep going. Thank you.
I am not sure what Ashleigh's future is, but I know I am so very blessed to wake up and look at her beautiful face each day.
Honestly, I can go on all morning about Ashleigh and how wonderful she is. I really don't know where I am going with this post.
There are so many people who have come into our lives from this journey, I thank God each day for each of you. The people who come here to check on Ashleigh, who pray for her, her therapist who give Ashleigh the strength to fight, the residents (Mike and Matt) who we tortured for those 7 weeks inpatients, the nurses who took such good care of both of us. Dr. Renwick and the staff at the green modulars, not only do they take good care of Ashleigh, but they are so patient with a very intense mom (at times). Remember, a very dear friend of mine once referred to me as the lioness with her cub. Sue and Dr. K, thank you for the quick responses to the countless emails and pages. This year, I would also like to thank the ER at A.I. DuPont for the many, many visits we were there and received excellent care...a friend of mine, said we get rock star treatment in the ER. I would have to say, Ashleigh gets rock star treatment everywhere. To that friend, I only hope that you realize what a wonderful mother you are to your precious baby girl. I will always be grateful to the mother who so graciously donated her baby girls cord blood to save Ashleigh from a beast of a disease. Ashleigh has touched so many lives and I thank each and every person who fell in love with Ashleigh for your continued support, care, prayers, love and HOPE you give to Ashleigh and our family as each year passes us by.
Happy 3rd Birthday, my sweet Ashleigh. You are so very loved.
Thursday, November 10, 2005 3:22 AM CST
Okay, Okay...once again, I am so sorry. I don't know why I am not updating on a regular basis.
Ashleigh has been doing good, she has good days and bad days. We are preparing to change her therapy over to the school district. We are loosing our Early Intervention therapist, Sue, Stephanie and Ann. We are not happy about his, but they really think that Ashleigh has moved pass what they are able to provide and that the school therapist will have alot to offer. Ashleigh is even getting a teacher. I am so excited for her, yet nervous for the change.
Ashleigh is also getting a nurse. She is starting in 4 hours. I am nervous but excited. With Howard being gone, it has been a little difficult to do something, even around the house. Ashleigh requires alot of my time. For those of you who know me, I am not good at letting people care for Ashleigh. A wonderful woman once called me the lioness with her cub.
Ashleigh also received her first vaccine, a flu shot. She did not handle it well. She had difficulty with her secretions within a half hour. She required a ton of suctioning. I took both Mackenzie and Ashleigh for the flu shot and a check up. After the shot we went to feeding therapy, I dropped Ashleigh off at therapy and took Mackenzie to the cafateria, Sarah (who is very use to Ashleigh and knows her care) had them call me back because Ashleigh was full of secretions. I suctioned her and cleared her out and within minutes she was full again. We took her back over to the doctor (in the same building). Her oxygen was low, but she was able to bring it up. We made sure she was stable and went home. On the ride home, I had to stop 5 times and suction her, twice her color was bad so I put her on oxygen. We made it home and Ashleigh went to sleep...she was fine for hours. Later that night Ashleigh developed a fever. I will talk to her doctors if we are going to proceed with the second dose of flu and other shots.
Mackenzie did wonderful in her horse show, she placed 2nd for walking and turning and 1st for trotting. She was so beautiful, so proud of her. She is having a tough time with Howard being gone, she cries at least 2 times a day.
Howard is doing well, he is very busy and we don't get much time to talk. Usually when we do it is to get things done. There is not much time for us to have casual conversation.
We lost two weeks of post on the guessbook, if you posted within the 2-3 weeks can you check for your post. Most of the post were from when Howard was deploying. Your post really means alot to us, so if they are missing can you please take a moment to re-post them.
Make a Wish Foundation is coming out to talk with us, Ashleigh's doctor put us in for it. Ashleigh really enjoys the water, but it must be heated because of the difficulty Ashleigh has with regulating her body temp. So, we decided that Ashleigh would wish for a hot tub for her to have therapy in. We felt like this would best benefit Ashleigh and her needs.
Birthdays...Ashleigh will be 3 on Tuesday. What a huge celebrations?! It is a day we are blessed to have. I am looking for a great way to celebrate so if anyone has a "germ free" way to celebrate please let me know. Mackenzie will be 6 next Friday...amazing. I can't believe my first baby girl is getting so big. I am so proud of her, her life has not been easy but she really is a wonderful little girl. Mackenzie is having her first friend party, she is having a princess tea party with Belle. She is so very excited. I am excited for her. She deserves it. I wish Howard could be here for this. This will be our first birthday(s) celebration at home in 3 years. This will be Ashleigh's first birthday celebration in New Jersey.
Please keep our friends the Kristoff and the Trimpers in your prayers. They really could use alot of support right now, so after you sign Ashleigh guessbook, please head over to their sites and sign in for them. Hint, Hint! ;-)
www.caringbridge.org/mi/trimpermld
www.caringbridge.org/ct/oursonryan
Thank you for your continued support, love and prayers.
Monday, November 7, 2005 8:20 PM CST
God received a beautiful angel tonight at 7:15, sweet Maddie Trimper entered Gods arms, she is healed, whole and free
God Bless you sweet Maddie.
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