Allisons life story

Allison's life story
Written by Scott Baumli(Daddy)

Allison (Sissy) was born October 5,1994.It was the happiest day of my life.She spent her first 3 days in the hospital with me, i never put her down.Sissy was the most beautiful thing to me.She love to sleep with her head between my shoulder and my head with my ear pressing against her head.But on the third day they came in and checked her out like they do but didn't say anything.They just gave us an appointment at the Doctors office.So about a week after Sissy & Mommy got out of the Hospital we went to the appointment.Again,they didn't say anything.Finally, a day later they called us and told us that she had Down Syndrome.That was very unexpected.We already had one child with Spina Bifida, what were we gonna do?George was already a handful and we were young,Jodi was only 20 and me 25.A lot of things went through our minds that day.Could we handle it?How bad is she gonna be?We already knew some kids with Downs and they were bad cases ,so to us things looked pretty bad.But Jodi and I Got over our fears real quick 'cause this is still our little baby girl,whom we loved very much.
Also the Doctor scheduled us an appointment at Children's Mercy for the cardiology clinic.Why?I know my heart isn't the greatest but my daughters heart....No way, there can't be nothing wrong with it!!So we went.I never cried more (except when she was born) than I did when I heard what the Doctor had to say.Her heart had several holes in it and two chambers were one,Sorry i don't remember what they called it.Again Jodi and were scared to death.What's the future hold?Does she have one?I had a permanent picture of what i saw on the ultrasound and I know what they are suppose to be ,'cause iv'e went through them many of times on my heart growing up.We had other questions.Can they fix it?When?What are we gonna have to do to help her make it that far?They said we should try to hold off open heart surgery for as long as possible,so she could get a little stronger.

So now my Sissy and I got even more closer.She is my little angel and we weren't gonna let nothing make her a real angel.Allison was always content in my arms and it made me an even prouder Father than before.
They finally said they would do surgery after she got to six months old.That's fine,We could wait.Then one day we noticed her turning blue.She's breathing o.k..What in the world could cause that?So off to Bothwell Hospital in Sedalia we went.Next thing I know she was on life flight to Kansas city and Children's Mercy.Which is when we learned a great deal about Congestional Heart failure.Oh, it was scary.They said we got her in just in time.She was in there about 2 weeks before she was healthy enough to go home.So we went home with an education of what signs to look for.
A couple of weeks later ,again, she looked pretty bad.And again we headed for Bothwell.This time we knew what was wrong with her.I remember walking in the emergency doors with Allison in my arms and saying,"I think she's going into congestional heart failure.".I was never more so proud of a Bothwell than that time.It wasn't 10 seconds they had her out of my arms,on a bed,clothes off and working on her.Also they had immediately had the phone calling Children's Mercy and life flight.
It's scary knowing your daughter is on a helicopter, in that shape,and that you will be about an hour later that her.What if something happened to her on the flight?How would we know?What's she feeling right now?Does she know what's going on?Some of those questions we'll never know.
This time it took three weeks before she was healthy enough to go home.And things were back to normal.Sort of.We were also proud of her pediatrician Dr. Ebrahimi and her cardiologist Dr. Ong for the way they handled Allison.Dr. Ebrahimi ,still to this day,when we go to the emergency room with Sissy,he immediately sends us to Children's Mercy.90% of the time by helicopter.
It wasn't two or three weeks later she went through the same ordeal.This was the final straw for Dr. Ong,us and Allison.So they scheduled her an appointment for the surgery.So after she was out of the hospital we had a month to get things figured out.We wanted to know where the blood came from and things like that.We found out my mom's neighbor,whom i've known for a long time and growing up we went to the same church,had the same blood type and the father,Ray,and the two daughters ,Dawn and Dana were willing to each donate a pint.That's our God at work.Thank you.
So at 4 months old our little girl was about to become a big girl and not by choice.Her Mommy and I were so scared.It was very hard to let the nurse take her out of my arms.But I had to give her up.And the emotions were high.Jodi and I cried and held each other during the whole operation.We didn't know what to expect.By this time Down Syndrome wasn't even in our minds.We had forgotten that problem a long time ago.
After the surgery,she was in I.C.U. and it was hard to see her all full of wires holes and tubes.But we stayed by her every second we could.Here we were in the city and no one around all the time.But at least we did have friends and family show up once in awhile.That helped time go by.And there was the Ronald McDonald house to go to(Thank God for them too).After all Allison's life was a Roller Coaster ride the whole time.One day they'd say she doing pretty good and the next she's hanging in there.Jodi was having nervous break downs through all this.A 20 Year old Mother is not suppose to go through things like this.After all our 2 year old son w/ Spina bifida was apart from us every time something happened to Sissy.So that put a good 4 months off and on away from us.So three weeks of roller coaster rides Allison started getting better.The fourth week(?)they finally was able to let her breath on her own and the (temporary)pacemaker wasn't kicking in much.Oh boy were we happy parents.
I'm not sure how long she was in the hospital but it seemed like eternity to us.But she did come home healthier than we left.We learned about Lacex,Dijaxen,Caotopril,Saline, and breathing treatments.These are things adults take not a 6 month old baby!At that time we were already in the knowledge of Ditropan,supposetories and catheters for George.Our Medicine cabinet looks like a Pharmacy.And we called each other Nurse or Doctor.But we managed to keep up and Jodi would have a breakdown about every 3 months.
So as the years went by everything was fine and we just dealt with the Downs.But Allison still went through a couple of heart failures and viruses and things but they weren't as bad as before.So she was in and out of the Hospital several times and several Life flights too.
Until she was 2 1/2.She had finally started walking.Jodi and I was walking down to my Uncles house while the kids were playing at Granny and PaPa's house , we live accross the street from them and our Uncle lives about 400' from them.So everybody was watching the kids and Allison is usually by herself and quiet (she didn't know how to talk).Well she followed us and we didn't know and walked right into a pile of ashes that had been burnt 3 days prior.Unexpectedly they were still hot.So Allison got severely burned on the legs , feet and hands.That was the last thing she needed.We just heard Granny yelling to us to come help.So we got her inside , took care of her and called the volounteer fire dept..There was no way a parent could be strong for thier little girl in that situation.Especially since i've always told her that I would not let anything happen to her , a Fathers nightmare has just occured.When Fire Chief Jim Pratt arrived he knew imediatly what to do and called in Life Flight.The response time was perfect.And again Sissy was flying off to the city.Only this time it was Columbia University Hospital.There has to be better reasons to get to fly than that!
At the hospital they did skin graphs and took care of here real well.Again, though, it was another roller coaster ride.The only thing is we didn't know just how serious this could be, especially for her.It took a call to Dr. Ong ,her cardiologist whom is real good with discussing matter and concerns with us,to make us know what's involved and what could happen.
The one time I remember most is when Jodi was downstairs and I was with Sissy and she was asleep.The nurse was in there with her, one nurse to a patient and that's where they stayed,so I went down to find Jodi.After about 10 minutes, my beeper went off and I went back upstairs to find Jodi in the hall and the doors to the burn unit shut, which means they are doing something and nobody is allowed in.Doctors were running in and out and to my suprise it was my Sissy they were trying to save.She had stopped breathing.Come to find out this started as I was walking out 10 minutes ago.
So it took a month to get her back up to where she could go home.
All in all that was really hard to deal with.Since 6 weeks prior to that Jodi had to go and watch her brother pass away from Cancer.Then 4 weeks prior there was a wedding to do for her mom and my dad.And 2 weeks prior we were in the same hospital to find out her twin sister's husband, a good friend,died in flight to the University Hospital from a car wreck caused by his diabeties.Everybody leaned on Jodi through that whole 6 weeks and now she was needing a lean to.
Allison is a wonderful little girl.Everyone that knows her can tell you she is Daddy's girl.She's been through a lot in the past 4 years but i'm glad there's still more years to come.Her expressions on her face tell you everything you need to know.Still to this day she loves laying on me with her head on my shoulder and my ear tight against her head.Her 2 year old sister ,Becca, is advanced beyond Allison but she doesn't let that bother her.Sissy communicates with expressions,some talking and some sign language.when she wants something she'll grab your hand and take you to what she wants and points to it.The next step ,which has been a step for a long time, is potty training.Someday she'll get it right.
Thank you for reading my story about her and i hope you undestand just what some children and parents are up against.

Special needs children are usually the best natured kids in the world and I know my two are very well natured and loving.

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