[tri-wings] thank you to all

Thank you everyone for all the messages of support. I must admit, It was a  
bit overwhelming until I checked with a friend who clued me in and said that I  
didn't have to respond to each individually.  I'm just finishing up the  
thankyou notes from the funeral.....
In answer to some of the many and much appreciated questions: 
Analee joined our family via adoption about two years ago. She is the bio  
cousin of Morgan T-18 and I was finally able to be able to speak with his  
parents, Holly and Mike, at her funeral. Before her death, her bio parents  
didn't 
want us to have contact with anyone in Analee's bio family and we agreed  to 
respect their privacy. Analee and Morgan have the same genetic/chromosomal  
issues so she too had Trisomy 18. 
Analee's bio parents chose to treat her far differently than her cousin who  
is given every opportunity to thrive and succeed in whatever way he can.
Analee spent a good portion of her time being left waiting to die. She was  
given her early surgeries but then her parents lost hope and tried to keep her  
comfortable while they waited. At the time she came to us,  Analee was 8yrs  
old and weighed just 17lbs. It took a long time for the adoption to go through 
 and so our hands were tied as far as providing much by way of medical 
support.  We bought what we could on E-bay and paid for appointments with cash 
to 
keep her  bio parents content.  We were able to get her weight up some using NG 
tubes  but until we got a G-j tube placed in Dec. we didn't have much success. 
Once the  adoption was finalized she was able to have her hip surgery, to 
untwist her body  which made her physically more comfortable and ended years of 
digestive  problems. Sadly she spent only one day totally free of her casts and 
body brace  before she got so very sick on May 7th and has to be  flown to 
MLPS where  she spent the next couple of weeks. By the time she was released 
and 
was  readmitted to our local hospital, she had suffered massive neurological 
damage  from having had a seizure that they couldn't stop for several hours.as 
well as  multiple organ failure.
She spent most of May in the hospital and approx. a week of June as the  Dr.s 
tried to figure out where her infection was and how to control it as well  as 
determine the cause for the change in her Neuro status.  The best they  ever 
came up with was a UTI and a sinus infection. Ultimately they just didn't  
have any answers and we chose not to continue to let them keep looking as they  
were considering a spinal tap, etc... just to see if anything showed up...... 
We chose at that point to head for home and spend the rest of our summer  
playing and being together as a family. We promised her that we would be all  
done with needle sticks and hospital owies and only go back to see  friends.
The week before she died we did go to see her peds. specialist to go over  
all of her tests and review the findings of all the Dr.s and Neurologists who  
had seen her since May. Everyone agreed that she would not recover her lost  
mental functions but that she would likely live "many"  years as she  was.  I 
was thrilled but not really trusting of what I was hearing. Somehow  we knew 
that we would probably only have the summer with her. 
 We told friends that the Dr. s were hopeful but that Analee was very  tired 
and seemed to be working hard at sprouting her little angel wings since  she 
slept for a good part of the day.  Since she got sick in May she was no  longer 
able to swallow so she needed constant suctioning and had to be watched  
since she didn't make noise anymore, it was just a look that she had when you  
knew she couldn't breath comfortably. 
The day before she died we spent the afternoon with her bio sisters. We  were 
thrilled that she was able to stay awake the whole time. Sadly, their  
parents chose not to tell them how sick Analee was. I know they sensed it, I'm  
sure 
It was still hard for the oldest at 11 to realize that she didn't get to  say 
goodbye.
Analee slept for a few hours when he got home but was up all night needing  
lots of suction. Her heart rate was elevated which was not totally unusual and  
her O2  level was a bit low but not concerning. We talked about the  fact 
that we'd probably need to look at bringing in oxygen in the next couple of  
weeks. I dozed off around 7:30 a.m. and at about 9:15 a.m. Morgan woke me  to 
tell 
me to listen to Analee. Her breathing was a bit different so we took her  to 
the livingroom to give her a Neb. tx to see if that would make her more  
comfortable. I remember thinking that she may not make it through another night 
 
like the last and we should call our friend who would want to see her  again.  
Just after starting the Neb tx Analee took her last breath.
We kept her home until later in the afternoon when we had to take her over  
to be embalmed.  We spent those first hours holding her and crying and  letting 
each of her brothers and sister touch and feel her as we tried to help  them 
understand what was going on. (each of our kids is profoundly/severly  
disabled.). after she was embalmed we brought her back home again and got her  
cleaned up and laid her in her crib surrounded by her blankets and toys that  
meant 
the most, We dressed her and did her hair and spent the next few days in a  
daze as the house filled with family and friends. 
We had Morgan's brother build her casket. And as people came to the house,  
they added messages, Picts, handprints, etc,, to the outside of the casket..We  
had another friend make the liner, and had classmates do the readings in 
church.  Her music teacher and casemanager took care of music, her paras 
brought 
up  gifts. her godparents passed out communion, and all 4 of us parents acted  
as pallbearers.
After the funeral we brought her back home but she remained in the casket  
with just the lid open. We had everyone back  to the house for lunch here.  The 
following morning, Morgan and I  put the things that needed to go into  her 
casket in there and took her to the funeral home to be cremated. We let them  
know that we wanted to take her in ourselves and they were fine with that.
We continue to be really glad that we did  so much of the preparation  
ourselves. It was really nice to have Analee here with us during the time that  
she 
would normally have been in a funeral home. In some ways it may have made  
things harder too.  I still can't bring myself to stop turning on lights as  it 
starts to get dark, And the music has been playing in her room since the  
morning that she died. 
Her 10th birthday would have been on the 22nd so we've already gotten to  
face the first of those as well.  For now I feel like we stumble through  each 
day waiting to wake up from this horrible dream.
Sorry about being so long, but her story was a bit complicated. Again, I  
appreciate  just knowing that there are so many out there who know what it  
feels 
like to want to hold your child just one more time.....
 
Nancy
 
partner to Morgan, Mom to Sky 13
Analee (9) , Tony 7, and Ian 3


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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