1 year Ampuversary

Today is Allison’s 1 year Ampuversary.   

It is weird to think that one year ago we said good bye to her sweet little foot that had the cutest 4 little toes.  One year ago our lives permanently changed and I became the mom of an amputee. What a year it has been.  Allison amazes us daily.

 

She started crawling with her cast on. 

She got her first prosthetic - her monkey leg as we called it.

She was pulling up to a stand with her first prosthetic

She got Leggy #2.  Her Husky leg.

She started walking at 15mo, and now there is no stopping her.  She is ready to run.

 

She can climb up on to everything

And into the furniture/ toys

 She has shown us that nothing will stop her

She is an inspiration to the rest of us.  When I am having a bad day – I stop and think, I could be so much worse.  She gives me the motivation I need to keep going.  She does not let her leggy stop her.

She makes me laugh

I am so grateful that we took our Dr’s advice and had Allison’s surgery at such a young age.  She is hitting all of her development milestones – just like any other able bodied child. She does not know any different.  She does know that her leggy helps her to walk.  She gets excited in the morning when I ask her if she wants to put her leggy on.  She smiles real big and points to it on the coffee table. 

 

She has opened my eyes to that fact ‘everyone is different, and that is ok.’ (My 3 year old says this all the time)  I have always know this – but now it’s real, and right in front of me daily.   She has made me more accepting of the child that is a little more shy, or difficult at the store or restaurant.  I may not know their special need – but if I assume they have one, physical or not – it makes me more understanding.  I have more patience and understanding to adults with disabilities.  To someone who is a little slower than I am.  To that person who may park in the handicap spot and they get out and ‘appear’ fine.  So does my Allison.  She ‘appears’ fine – but she will always need assistance to walk. She will always need her prosthetic leg to help her out.  She will always be legally permanently disabled.  I definitely do not judge as much as I used to, yes- I judged people without knowing their situation.  Everyone has a ‘thing’.  This is mine.  A sweet child that is an amputee.  It is still weird to see myself this way – but it is who we are now.    Our new ‘normal’.  

This is normal for big sister and big brother.  Making sure Allison has her leggy on in the morning.  They always want to help get her leggy socks or get her leggy and had it to us.  They want to ‘help’.

 

She is now 18mo old and still in prosthetic let #2.  She has had this leg since the end of May.  

I wonder what the next year will bring??

Surgery

The weeks leading up to her surgery date were emotional.  It was a very hard decision no parent should have to make, but we knew it was the best decision.  It was hard knowing she was going to have a major surgery.  It was hard saying good bye to her sweet little foot with the most precious 4 toes that you had ever seen.

Before the big day- I made foot prints of her feet in a special photo frame.  My older sister also came out from UT to watch our other 2 kids while we were at the hospital for her surgery.  She helped me make a foot mold of her left foot -so we would have a perfect memory of that sweet foot.  I went to our local craft store and bought a keepsake molding kit.  They turned out perfect.

Fri 11/9/2012

We got up the day of surgery and headed out. We had to be at Shriners at 7am.  Surgery was at 9am. She was going to be having a Syme's amputation.   We went through the normal pre op procedures.  Waiting.  Met with the anesthesiologist.  Waiting, and then Dr R. came in.   She said hello, and that they were just about ready.  She marked her left leg for the surgery and said someone would be by shortly to come get Allison. I'm sure she said more than that... I just don't remember.  Oh and we picked the color of her cast - Purple.

Allison had been given a 'Good Luck' Bear from the hospital before her surgery.

 

Allison was doing great- I was a ball of nerves.  At 9:10 a surgery tech came and took Allison from us and I kissed her good bye.  I was really surprised that she didn't cry when a stranger took her from us. They took her back to the OR.  A Nurse said that they would keep us updated every hour as surgery progressed.  She then took us down 1 floor to our room - where we would be staying for the next two days.  We were told that surgery had started at 9:50 and all was good.  We sat in our room for a while. Then we went back up stairs and sat in the OR waiting area.  We had been told surgery would be about 3 hours.  At 12pm Dr R. came out and said Allison was in recovery and starting to wake up and that we could go back to see her.

That was - thankfully- the quickest 3 hours.  It was helpful that my mom, mother in law, sisters and my best friend were there for my husband and I.  We went into recovery and Allison was trying to sit up and she was smiling.  She was very happy to see us.  We were able to hold her and I was able to nurse her, as she hadn't eaten in quite a few hours.  She was still very drugged and did not appear to be in any pain.  Dr R said surgery went better than expected and was very pleased with how it all went.
 

That first day she slept alot.  We made sure to keep up on her pain medicine. 

Allison got a good night sleep.  Mommy, not so much.  The pain medicine would drop her oxygen levels.  Through the night I had to keep a oxygen mask near her face to help with her oxygen levels and keep them up where they needed to be. 

Saturday when daddy came back to the hospital he brought big sister and big brother.  My sister and their cousins also came to visit us.  Allison was very groggy from the pain medicine.

Brianna and Noah had been coming to Shriner's with us to Allison's appointments.  They were familiar with the hospital and Dr R.  They knew her leg didn't grow right when she was in mommy's tummy.  We had been telling them that the Dr was going to do surgery and take her foot and that she would be in a cast for a little while. Then they would make her a new leggy and foot she so can walk just like them.  

When they got to the hospital to see Allison, they said hi, saw her cast and then asked if they could go to the play room.  They had remembered it from the previous appts.

Saying Hi to cousin Cooper.

 

After saying hi to Allison, the kids had more fun looking out the window at the the amazing view from our room.   Then I took them to the playroom. 

Over the course of the day - we adjusted her medication.  She was so loopy when it was working and then she was more her self as it was wearing off.   Her dosage was a little high. 

She was doing great.  Dr R was ready to send us home on Saturday - but I really wanted to stay 1 more night and make sure we had her pain meds at the right dosage.

We just hung out and watched movies and did lots and lots of cuddling.  She was doing great. She was eating well and her vitals were good. The nurses thought she was the cutest thing and they loved coming in to check on her.

Sunday we were ready to go home. We both slept fairly well - for being in the hospital. We got dressed and waited for our discharge papers and daddy to come get us.

I was so glad I had a stash of baby leg warmers.  They would be our best clothing option over the next few weeks while she had her cast on.  As big as her cast was - pants were not going to be an option.

We were on our way home. 

Purple Saturday 2013

College football season starts today.  Purple Saturdays are upon us.  We have been taking family pictures for a few years, and now it has become an annual tradition. (Yes -We are brain washing our kids early)   Go Purple Go. 

 2013

It's fun to watch the progression each year:

2007

 2009

2010

2011

2012

Let's Go Huskies!! UW!!

Our Decision

8/2/2012.   At 3 mo old we went to her next appt at Shriner's Hospital for Children, Portland OR.   She had her first x-ray.   At this appt we found out that her limb length difference, at full growth (meaning if she had no surgeries or intervention) would be approx a 15% limb difference.  Estimated at 5-7".  Here is what her limb difference looked like at 1mo old.

 

Her first xray. 

At this appt Dr. R talked to us about our 2 options.  Limb lengthening surgeries and amputation.  Allison's limb difference was on the upper end of what could be lengthened, but it could be done.  Her first surgeries (yes plural- surgeries) would have started at about age 5.  This would be to reconstruct her ankle.  Then the surgeries for limb lengthening would have begun at about age 8, and that is, from what I have read, about a 6mo process for each lengthening.  She would have had multiple lengthening surgeries over the next many years. Yet we didn't even know if her ankle could be reconstructed so that it would be weight baring- and even if it was - it would have been fused and would be immobile and could possibly still be painful to walk.   Dr. R also talked to us about amputation surgery.  She could have surgery at an early age and get fitted for a prosthetic right way, to keep with her development milestones.  She may have to have more surgeries in the future - but she would have more mobility than lengthening.  This was a lot to absorb at our appt.  Dr. R told us to go home and process this.  We didn't need to make our decision that day- but with in the next few months.

First we thought we would try a brace on her left ankle/foot to see if there was a possibility that it would help correct the way her ankle turned her left foot outward. The Orthotists and Prosthotist maker, Dr. Todd as we now call him, made the one below.  He told us to leave it on as much as possible and if there was any red marks that didn't go away within a few min of taking it off - to leave it off and call them back.

We noticed that first night that she wore it that she woke more often than normal and was a little more irritable.  She wore the brace for about 28-32 hours.  We took the brace off to look at her ankle that Friday night, thinking we would would leave it off and see if she slept any better that night.  Just our luck, red marks that didn't go away.

We had spent the past 48hours processing the information that Dr. R had given us.  We decided that night that the brace just really wasn't worth it. Her limb length difference was just going to be too much to lengthen - we ultimately made our decision over that weekend that there was no point in trying to correct her ankle when we knew in our hearts that amputation surgery would be the route we were going to go. Once we had talked about it and made our decision - there was a little bit of weight lifted off our shoulders.  We knew this was the best decision.

We went for our next appt on 9/21/12.  Allison was 4.5 mo old.  They took xrays of her ankle and her foot. 

 

We learned that ankle bones should be on top of each other - hers were side by side. (see above middle xray.  The only way to correct her ankle would be to reconstruct it and fuse the bones into place.  No mobility.  You can also see in these xrays that her left fibula bone is very very small.

Seeing these pictures of her left ankle was just conformation that we felt that we were making the best decision for her future.

We talked it over with Dr R. and told her our decision.  She agreed with us that this is the best decision for Allison.  The next step is getting inline for surgery.  When we left that appt - We were on the list to schedule her amputation surgery for November.  Allison would be just over 6 mo old. Dr R. wanted to do it when she was that young so that when Allison started to pull up to a stand and walk, she would do it with her prosthetic leg.  Within just a few days we received a phone call from Scheduling - Her surgery was set for Fri Nov 9th. We had the date. It was just 7 weeks away.