Monday, October 5, 2015

It's been a long time........

It has been a very long time since I have posted on here and A LOT has changed with Allie since then. The big news is, Allie is now tube-free!  She got her tube removed in June 2015.  We had an appointment to have it removed but it decided it wanted to come out early so it was a trip to the ER and surgery that day to have it removed.

Allie's GI Doctor insisted that her stoma would close on it's own but after a month and a half, it was still leaking.  We met with a surgeon and he stitched it shut.  That did the trick - her button is now closed tight!

Allie really likes having her tube out.  The site is looking great and she has no soreness at all.

As far as Allie's growth goes, her weight is at 39 pounds.  Her doctor is happy with that because she is following her own growth curve.  Her height was 43".  Her growth curve for height has dropped so we were referred back to Endocrinology in Marshfield for a follow-up.  It had been 2 years seen we seen them so we were due to check in anyway.

Endocrinology ran a bunch of tests.  They rechecked her for celiac, thyroid issues, hormone issues but everything came back normal. Basically they aren't sure why Allie isn't growing taller at a normal rate.  Her Endocrinologist recommended we give it 6 months and see how her growth is.  If she is not catching up at that point, he recommends we start her on growth hormones.  From my research and talking to other families, people have had great success with growth hormones so I guess we will have to make that decision if we are faced with it in April.

Overall Allie's health has been good.  She fought off a Staph infection with the help of antibiotics several months ago.  It was a little scary because the doc thought it could be MRSA.   And just this past week, she had her front tooth pulled out because she developed an abscess in the gum line of that tooth.  Allie always seems to get the "odd" things happen to her.  She cries every time we go to the doctor now, even if it's just for a checkup.  Poor peanut knows too much about doctors visits - it breaks my heart.

All in all, she is doing wonderful and loving 2nd grade! Chloe is doing great in 4th grade also.  Hard to believe the girls are old enough to be in 4th and 2nd grade.  Time goes bye too fast!

Here are a couple pics of Allie's tube removal and how it looked over time, plus the girls.....

Last picture of Allie with her feeding tube
Allie at hospital ready to get her tube removed

This is what her stoma looked like the day after tube removal. However it was leaking a fair amount.

Allie scared for the in office procedure to stitch up her stoma because it was still leaking daily.

A day after her stoma was cauterized and stitched closed.

5 days after her stoma was cauterized and stitched closed.

10 days - stitches were removed and it was looking good.

Allie - left, first day of 2nd Grade
Chloe - right, first day of 4th Grade

Allie's crazy abscess last week.  Dentist pulled her front tooth on Friday and it's looking a TON better!

Chloe and Allie at Pictured Rocks in the U.P.

Monday, March 10, 2014

GI Appointment

Allie met with Dr. Brown this morning.  It was a regular scheduled GI follow-up. Things are going good and Allie is doing well. 

Last month she went in for a weight check and had lost weight.  I'm proud to say, she's back up to the weight she was at in December, so that's good.  I wish she would have gained but at least she hasn't lost any weight.  Allie weighs 33.4 lbs.

May 9th 2013 was the last time Allie needed to use her tube for any period of time (besides two weeks when school started) so I thought I would ask Dr. Brown what his thoughts are on possibly having her tube removed.  He thought we were almost there.  He thinks we can take it out as soon as school it over.  He would like her to keep it in until school is over just in case she gets sick and doesn't recover fast enough and we need to use her tube.  We are good with that because Allie's not quite ready to give it up just yet.  She is quite attached to it even though we haven't had to use it in quite a while.

Allie is still loving school and working very hard at it.  She is struggling with her reading and math but she has started to receive additional reading help at school with the reading specialist once a day for 30 minutes.  I think this will really help.  In addition, I have been working with Allie every night on her letters and sounds.  She is making great progress.  The teacher can see that she is trying very hard and she can tell that Allie is frustrated because she isn't catching on as fast as others.  Allie's confidence is low and she is quick to ask questions and say she can't do something.  The school has recommended that Allie join summer school as an extra boost to help her with reading and math.  I'm not a fan of summer school because I think the kids really need a break but Matt and I have discussed it and we both agree this could be what Allie needs.  It's only for 4 weeks and she may love it.  My hope is that helping her at home daily and also at school, we can catch her up to be at grade level.  We have known that Allie would be behind slightly simply because of everything the poor child has endured.  So, in perspective, Allie is doing amazing in school and learning at her own pace.  She is getting the little extra help she needs and is making huge gains.  To think she went into Kindergarten not even knowing her alphabet and now she knows all the letters and can read some words is amazing.  We are so proud of her!

Here are a couple recent pictures of our little Allie.

Allie & Cosmo

Allie after she did her own makeup

Chloe and Allie painting at the Clay House