Saturday, May 28, 2011

Endoscopy pictures

Here is a copy of the pictures from Leona's endoscopy.

You can't really see it, but the bumps of irritation were around here.

You can kind of see the red spots of irriation.

Friday, May 27, 2011

Another Surgery is Scheduled

Looking at the title to this post, many of you might be confused...NO Leona is not getting surgery and NO I'm not either. 

You guessed it...Ben is going in for surgery next Wed to fix the digital nerve in his pinky finger.

Why? you ask!  Well...this past Wed he put his hand through the basement window.  We were getting severe weather and he went down to close the windows.  He applied a small amount of pressure and it was enough to break the old window.  He sliced the inside of his hand, up in the crease where his pinky attaches to his palm. The cut was very deep and a little over an inch long.  His finger is almost completely numb.  The surgery will be at 5PM at Elkhart General Hospital.

They will numb his complete arm, armpit down.  They will put it in a turnicate to cut off the blood flow.  They will go in and repair the nerve as best as they can.  He will be in a splint for about 2 weeks as it heals. 

So the last healthy person in our family is down too. 

Needless to say our family is down in spirits too.  We are trying to trust God and remember that joy is not based on our circumstances, but on the peace that comes only from the Father.

The Endoscopy Experience

Well first of all...thank you for your prayers.  We know they were all at work leading up to and during today's procedure.

First of all, we want to publicly say thank you to Ed and Nancy Ferguson for providing a place for us to stay.  We were completely humbled by their welcoming attitude and servants spirit.  What a great godly family! We only wish we could have stayed longer to visit and get to know them more :)

So it was an early morning for us with an alarm at 6:30AM.  We arrived at the Surgery Center of Indianapolis, just north of Riley's Clarian North campus at about 8:30AM.  After about 10 minutes in the toy waiting room, we were headed in to get started.  At about 9:20 (10 min. AHEAD of schedule) they were starting the anesthesia and she was going under.  She was pretty scared with the mask on, but it only lasted about a minute before she was out.  The dr. started the scope and they had to put her under a little more because she has a really sensitive gag reflex. 

The scope took about 15 min. total.  They found some bumps at the back of her throat.  She said that the causes could be reflux, sinus drainage or allergies.  When she got to the stomach, she found some irritation.  She said this could be from several things...including not eating this morning or bacteria.  She took biopsies of the large intestine, stomach and the esophagus.  She said that they would not be able to diagnose anything until the results come back.  They also took some blood work for some main allergens (milk, egg whites, wheat, etc.).  We'll hopefully hear by next week.

The dr. did put Leona on prefacid, 15mg once daily.  It is the same amount that she was on from 5-12 mos. This was based on the bumps she saw and the fact that Leona has been vomiting again.

We went to the recovery room at about 9:40.  We waited until she woke up on her own because the nurse said that would help her to sleep off the anesthesia.  She woke up with just a little fuss and then acted totally normal...she wanted her DADDY!  We were in the car and leaving by a little after 10AM.  We were shocked to say the least! We kind of tested her out for about an hour with a trip to our favorite store...Trader Joe's and knew she would be fine to travel home. 

So...the whole experience went well.  Going into it we didn't know how we would be able to handle seeing her go through it, but we were actually thankful that the surgery center was tailored for parents to sit it on the procedure. WHAT A BLESSING!

Again...we will keep you updated!

Tuesday, May 24, 2011

God Provides Again

This Friday is Leona's endoscopy in Indy.  It will be just north of Riley's Children's Hospital at a pediatric surgery center which is specially made so parents can stay in the room. I am so glad!

God provided a place for us to stay through a friend's parents.  We are so thankful for His provision with a place to stay and lower gas prices! 

The Lord has also reassured us that we are making the right decision.  Suddenly out of nowhere Leona has been vomitting again.  She had a vomitting incident last Sunday that we thought was related to a possible allergy from a snack in the church nursery.  However, she did not eat anything that we know of.  The nursery workers are so careful with her allergies to milk. Then, she had 2 incidents, several times where her stomach has been upset, and bad bowel movements.

We would appreciate your prayers.  Honestly I am kind of excited about it.  Finally some more answers whether negative or a diagnosis!

I apologize if I/we have not kept in contact with some of you.  Life has just been so busy lately...well who am I has been that way for the past 2 years.  We hope that reading this blog helps keep you up-to-date on everything here.  I will post anything we find out on Friday!

Here are some pictures I thought you might like to see:
Rachael around 2-3 years old

Rachael with her Mom (again around 2 years old)

Rachael (remind you of anyone?)
I have some other good ones that I'll have to post sometime.  When I look at pictures of me, all I can see is Leona!  So neat!

Tuesday, May 17, 2011

Mother's Day

We hope you all had a great Mother's Day.  We wanted to send out a special thank you to our Moms and Grandmas. We are so thankful for our Moms, Linda, Cindy and Anita!  We love you all SOO much.  We are also thankful for our Grandmas, Halcyon, Ruth, Charlotte, Dot, and Noreen. We miss you all so much.

Ben and Leona took me out to Chili's after lunch.  It was so much fun!  We thought you would enjoy some of the pictures.


We hope you all had a great Easter.  We thought you would enjoy these.

Here are some Easter pictures:

Enjoying a marshmellow chick.

Checking out her Easter basket with Daddy!

Decorating Easter eggs with Daddy and the Baptist Children's Home kids.

Endoscopy Is On

We met with Leona's pediatrician, Dr. Wendy, Monday and talked over the idea of the endoscopy.  She is 100% on board with the pediatric gastroenterologist, Dr. Maisel.  She puts a lot of trust into Dr. Maisel's opinion and stressed that she is one of the best in Indiana.  She also emphasized that with her experience with her other patients that have been to Dr. Maisel that she doesn't often request endoscopies.  In Dr. Wendy's opinion she feels that if Dr. Maisel warrants one, there is reason to go through with it. 

Of course, Dr. Wendy's own opinion is that it is time to find definite answers. To rule out all three possiblities, the endoscopy is needed for all 3.  The other option is to just put her on medication and see how she reacts to it, but she doesn't agree with putting her on medication for things that have not been determined or diagnosed.  She also feels that a set back could come later down the road and then we would not have any answers to go on.

SO...the Endoscopy is ON! 

It is scheduled in Indy for next Friday, May 27 at 8:30AM.

One more thing that added to our decision was the fact that Leona had a vomitting issue on Sunday right before nap time. The incident had the same characteristics of previous times, so it is definitely the same issue. She came out of our church nursery with some break out on her face, so we are suspecting some type of exposure to an allergen.

It will be interesting to see what shows on the allergy lab work they take during the endoscopy.  Of course, Dr. Wendy did say that only things that her body has had exposure to will show up so she might need further lab work later down the road.

We appreciate all of your prayers.  We are hoping to have some answers on Friday, but other results will come back on June 20.  We will keep you updated as we find out more.

Saturday, May 7, 2011

Newest Update for Leona

Well, we just came back from a 2 day trip to Indianapolis.  Ben had a conference for work all day Thursday, while Leona and I went to St. Vincent's Hospital for her appointment with a Pediatric Gastroenterology appt. with Dr. Susan Maisel.

Dr. Maisel was great!  She has many awards on her wall including Patient's Choice award for 2009 & 2010.  Leona loved her and actually didn't fuss when she examined her! So I went through the last 2 years of everything and she came up with some ideas; 3 possiblities to be exact.

Basically this is acid reflux.  The most likely cause would be from allergies.  The danger is that she could be getting used to it and it could be less severe now that her stomach is growing and the bands at the entrance and exit of her stomach are stretching, thus showing less symptoms.  This is prevalent in children with fair skin and red hair.  She said that this is actually a form of eczema inside the body.  One of the side effects that I had not known previously is congestion, which Leona has mostly everyday in some form. The dr. said that many adults are actually walking around with reflux assuming it is allergies b/c they have gotten used to the pain.  She suggested that I get tested if Leona tests positive. 

Leona has already had an upper GI and a feeding study which would also be used for this diagnosis and both came back fine.  Also, they had diagnosed this at 5 mos. and tried prefacid for 5 months or so.  She didn't show a huge difference on the meds.  Of course food allergies need to be tested for.

Helicobacter Phylori
Basically this is a bacteria inside the stomach.  It lives in the acid.  This would be treated with antibiotics.  Leona's previous specialist suggested this as a possibility and suggested to just treat with a particular antibiotic.  In January, she had been on some type of antibiotics, so I am wondering if that is why we are seeing less symptoms.  Who knows!??!

Celiac Disease
The last possiblity she suggested was Celiac Disease.  This is a gluten allergy and can be seen in the form of a milk allergy if left untreated.  This can lead to low weight and height growth.  This can also show in rashes which Leona gets frequently on her fair skin. We had brought this up several times to the 2 doctors, but they said that this was unlikely because she started having problems before she had solid foods.  With every bottle until 21 mos, she had it thickened with oatmeal, so she got a lot of gluten daily for a long time. This would require a biopsy of the large intestine during the endoscopy, I believe. that's the scoop from this doctor.  She will also take lab work and test for allergies during the endoscopy. We did schedule the endoscopy for Friday, May 27 in Indy, but are not sure if we are going to go through with it.  These 3 ideas have been on the table before, so we are making an appt. with her regular pediatrician to discuss what she thinks.  If you have any wisdom or experience to share with us, we would love to hear it.  We really want to figure this out but we don't want to put her through the endoscopy if we can avoid it.  Your prayers would be greatly appreciated too!