7/31/2011233 Days Old
On the 233rd day in the life of the most beautiful girl in the history of the world the morning began peacefully. I stayed up with Maya after her 6:00 feeding. We moved out to the couch and Maya slept as I watched a replay of last years KSU vs MU football game. Erin was able to stay asleep until about 8:00.
We camped out on the couch with Maya for almost the entire day. Maya had a bad day today. We did get out to an open house while Grandma Chris watched Maya. She was seldom awake and not for very long. Her color was OK this morning, but this evening she really began to struggle. She is on multiple medications on a regular schedule now in an attempt to stay ahead of things. Even with all the meds Maya was still irritable this evening. We gave her a bath and got her ready for bed.
As we were sitting in bed waiting for her late feeding Maya woke up. For some reason out of the blue her wonderful eyes opened up and she started to talk to us and play with her tongue. It only lasted for a few minutes before her crankiness took over, but we were very happy to see it. We still don’t know how Maya will do from here forward, but we feel like we don’t have much more time with her. Her respiratory system just can’t seem to keep up. we are in a hard place right now. We would love to have as much time with her as we can get, but it is hard to see her like this. We will keep doing everything that we can to ease her suffering. We will continue to hold her and love on her as long as we can.
Filed under Uncategorized | Comments (17)8/1/2011 234 Days Old
On the 234th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya was up once during the night from 3:00 until 3:30. This morning her condition was about the same as it has been for the past few days. She was very tired and her color did not look good. She rested all morning. Erin worked from home today. I hung out with Maya on the couch. She slept for most of the day. She had a nurse visit at 10:00. She will have daily nurse visits for the rest of the week.
That was not her last nurse visit of the day. after her 4:00 feeding Maya’s struggled harder than we have ever seen. She had not been awake all day and that concerned us. We knew that her heart rate was high and she had a temperature as well. After her feeding she really lost her color. We watched her toes turn blue, which we have seen before, and then noticed that the blue was spreading. Most of her feet and all of her hands were blue by the time she stablilized. We called her nurse for another visit, and phoned our families to let them know what was going on. It was the worst thing that we have seen from Maya since she had her last apnea. At the time I had no idea that the blue that had taken over her hands and feet would stop spreading. But it did.
When her nurse got here she had a temp again and her heart rate was 194 BPM. Her oxygen saturation was in the low 70%. She had recovered the color in her feet and just her toes and her fingers were left with reminders of the trauma. Slowly over the next several hours her color came back to her toes and fingers. She now has swings that set on very fast. I can be looking at her and think that her color looks really good, and 2 minutes later her lips are getting dusky.
When word got out to our families they all began to come over. My sister Krissie made dinner for every one, and they all got to hold Maya. Here is the list of everyone who was here.
Grandma Patti and Grandpa Greg
Grandpa Bob and Grandma Chris
Grandma Kathy
Krissie and Travis
K.C. and Michelle
David
B.J.
It was a full house , but it helped to pass the time. Maya has stabilized for now. It is times like these that we don’t know what to do. Our entire focus is on Maya. I can’t even turn on the TV when she is struggling this hard. When she is stable we hold her and sit and wait. We know that she will continue to struggle and that at some point she will not be able to keep up the fight. So our world is on pause for a while. It will take Both myself and Erin, with help from our family and friends to take care of Maya as she goes through this. We hope that we can find the strength, and we know we will be able to find the support that we need.
Filed under Uncategorized | Comments (9)8/2/2011 235 Days Old
On the 235th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Maya only woke up once over night. Yesterday we noticed that Maya struggled more just after her feedings. In the afternoon yesterday we started feeding her twice as often with half of the amount. It has brought Maya some much needed comfort. She had a good day today. With less liquid to process she was able to get some rest, and although she is still struggling she was able to wake up with bright eyes for a few hours today. We are so happy to have found a way to bring her comfort even if it is only for a few days.
Today Maya had a visit from Chris and Lori, Tristen, Hunter and Tyler. They got to spend some time holding maya as hunter entertained us. She also had visits from David, Grandma Patti, Grandma Kathy, Krissie, Grandpa Bob and Grandma Chris. She also had an extended stay by her nurse this morning.
We will continue to do what ever we can to bring Maya comfort. Sometimes we are unsuccessful, but today by changing her feeding we succeeded and we are grateful.
8/3/2011 236 Days Old
On the 236th day in the life of the most beautiful girl in the history of the world the morning began peacefully. Erin made it to work this morning, and I stayed home with Maya. With the help of Grandma Patti I was able to take care of Maya until Erin got home around 2:00. Maya was comfortable today. She slept for most of the morning. She is still struggling but she has adjusted.
Shortly after Erin got home Maya started waking up for short periods of time. She was awake several times for half an hour or so. She is still very tired. When she is awake she is not very active and doesn’t make all of the cool talking sounds that we have got to enjoy over the last month. We are still happy that we get some time to see her eyes again.
This evening Travis and Krissie came by for dinner, and Grandpa Bob and Grandma Chris came by for a short visit as well. Maya was in and out of sleep for most of the evening. We don’t know how long Maya can continue in her current state, but we are happy for a day like today. She was comfortable and happy and that is all that we can ask for.
Filed under Uncategorized | Comments (6)8/4/2011 237 Days Old
On the 237th day in the life of the most beautiful girl in the history of the world the morning began peacefully. As I was readying Maya’s morning feeding I noticed that her breathing was very labored and slow. At 9:20 this morning Maya Winnifred Allen passed away. She did not suffer or feel any pain. The only comfort to us is that she no longer has to struggle. She has fought long and hard for the past 8 months, and we are so proud of all that she was able to do. We were able to tell her goodbye and attempt to convey our feelings of pride to her before she passed.
We will miss her beautiful eyes, and the light that she has brought into each and every one of the days that we were able to cradle her in our arms. Our world is a little dimmer today. We are relying on the support of our family and friends as we grieve our loss, and celebrate the life of the most beautiful girl in the history of the world.
We will post our plans for Maya’s memorial service next week.
Maya Winnifred Allen on 8/3/2011 her last photo
8/9/2011
Just wanted to share a link to Uncle Travis’ blog post from a few nights ago. It was a beautiful post about Maya with a lovely poem. Be prepared with tissue in hand before starting this one.
Thanks, Travis. Even though you have only been in the family for a short time you feel like a brother to us. We love you.
http://www.travisvandenoord.com/
We plan to have all of the details of the memorial service finalized tomorrow and will post all of the information then. Thanks for all of the comments of support, prayers, and love. They all help us realize the profound impact Maya had on this world in the short time she was here.
The Allen Family
Filed under Uncategorized | Comments (3)8/10/2011
This morning began peacefully Even though Maya is only here with us in spirit. We made arrangements for Maya’s memorial service today. It will be at St. Andrew Christian Church this saturday. Visitation with myself and Erin as well as grandparents will be from 1:00- 2:00. At 2:00 we will have a memorial service to celebrate all of the joy that Maya has brought into our lives. St. Andrew Christian Church is just west of 127th and Pflumm. The church will be open at 12:00 for those who would like to send flowers.
Today we gathered up all of Maya’s unused medical supplies so that we could donate them. It was something that I was not looking forward to. As I packed up suction catheters and feeding tubes I realized something profound. Maya no longer needs these things. I was filled with a great joy. An activity that I had been dreading had turned into a happy moment as I thought of Maya at peace and without struggle. She still fills our heart with love. We still feel her light in our home. And little Maya needs no assistance from air tanks or feeding tubes. The most beautiful girl in the history of the world remains with us and gives us peace.
Visitation from 1-2:00, Memorial Service to follow at:
St. Andrew Christian Church http://www.sacchome.org/
13890 W. 127th Street
Olathe, KS 66062
We are asking for any donations in Maya’s name to be made to her hospice organization. The impact of Carousel on Maya’s life has been profound. A donation to this organization will help others receive the same care and love that Maya and our family received.
Donations should mention “in memory of Maya Allen” in the check memo or letter sent and be mailed to:
Carousel Program of KC Hospice
9221 Ward Parkway
Suite 100
Kansas City, MO 64114