Oct. 15, 2009 - TOS Special Needs E-Book is Now Available

 My Review of "Someplace Called Special"

This book is an excellent source of information and comfort. It's a special needs support group encompassed in a book.

Having children with ADHD, Spina Bifida, educational gifts and other miscellaneous processing disorders, I found the stories reassuring on our decision of the call to homeschool children with special needs.  The definitions, resource lists and testimonies are wonderful.

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Oct. 8, 2009 - October is Spina Bifida Awareness Month

October is Spina Bifida Awareness Month. Emma is blessed in so many ways. Spina Bifida is simply something that she lives with. She uses it as a tool to be a testimony of God's greatness.

The Schoolhouse Planner

 

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Oct. 6, 2009 - "Emma should continue to be home schooled"

I found the title of this entry to be awesome! It was at the top of page five from Emma's nueropyschological evaluation, September 25, 2009. The evaluation and report was expansive and very informative.

Emma was diagonosed with Cognitive Disorder, NOS.  She has processing disorders, like many children with Spina Bifida. Basically, we need to allow Emma enough time to do her work and be sure to take breaks. She will benefit from lists, checklists, multiple choice/matching activities-testing, and repetition of directions.

She will be evaluated again in 2-3 years.

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Oct. 1, 2009 - Foleys, Processing, ADHD and more

September was wild and wooly. Emma had a rough month with her bladder and kidneys. We also had Emma tested by a nueropsychologist concerning some processing issues I have noticed.

With her urologic issues she had been battling an infection as well as her new ureathra (the outspout for urine) producing a lot of mucus. The middle of September, she was occluded somewhere along the catheter and the urine filled her bladder to an alarming and uncomfortable amount. We went to ACH ER for help. (I'm getting pretty good at reading an ultrasound, by the way.) After a few weeks, the infection is better but she still has a lot of inflammation in her left kidney. Surgery can be done on her bladder to correct this but we are hoping that a little time and medicine will take care of it instead. We are praying that if that is God's will, so it will be and if not I know He will give us the grace to accept it. We will see the doctor at the end of the month.

Her nuerologic issues that have changed markedly since her April surgery were addressed at the end of the month. Some of the findings were alarming to me, but overall not surprising. Emma, like Macie & myself, was diagnosed with ADHD. The doctor believes it to be genetic, and I had already seen evidence of it over the last several months. Another thing was the fact that sometimes Emma can tie her shoes and others she would honestly not have a clue. What we learned is that Emma has issues with the part of brain that performs executive functions. To help with this we must really b-r-e-a-k down our day for Emma. We are expecting the final report from the doctor later this month.

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Aug. 25, 2009 - Emma, School and Health Update - August 2009

As I have let it be known in the past, we use a year-round schedule.  We arefinishing up our latest six-week session. Emma is doing alright, but I've noticed that her short-term recall is quirky. For example, we started doing some first-grade-type work this session. Emma is telling everyone she is in kindergarten. It's like it's she has never heard that she has advanced before. When Macie finished kindergarten our local homeschool group held graduations for kindergarten, grade 6 and high school. It has become a thing of the past, but maybe that's what I need to do for Emma.

Emma doing well all in all with schoolwork. We're pleased that she is making progress with reading and math. We do feel that maybe she is having a processing issue due to her condition and that might explain some of her emotionalism and keeping up with things we are currently talking about. She will be tested in September for that.

Emma has so many wonderful people that work with her through Arkansas Children's Hospital. They  have always been so good to work with my family and help Emma. That was why my NaNa requested funds be established directly at ACH for the Spina Bifida Program when she passed away a few years ago.

Emma had an MRI on Monday that was part of her routine in osberving and treating conditions related to Spina Bifida. She has had well over a dozen of these in her short lifetime. It turned out to be anything but routine yesterday. She has to be sedated for it and this time she woke up during the test. They had to start an IV which is extremely traumatic right now due to the post traumatic stress she is working through.

One thing we found out yesterday is that her urologic system was "extremely" enlarged. She had to undergo a bladder decompression (that's just cathing) and is wearing a foley catheter (not her favorite) until we see the urologist on Friday. Hopefully it's not a major setback and can be remedied with a different cathing schedule or medicinal change.

She also has a swallow study and a doctor's visit on Thursday. Emma lost 9 pounds after her surgery and her appetite has not been steady since. She has gained half of that back but we are struggling to keep that on her. She doesn't like Pediasure but we still are encouraging her to drink as much of it as she can. (Ironically, her sisters love it!)

***Please pray for strength and wisdom.***

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Jun. 9, 2009 - Ups and Downs for Emma

 Last week was about all Emma could take. She was constantly panic stricken, wouldn't eat, drink or sleep. She had given up and she was scared. We took her to ACH for help and they have a plan to help her get back on her feet, literally.

She is taking some anti-anxiety medications, doing exercises, and practicing her new routine. She really has been through a lot and I think sometimes we fail to recognize that. Thankfully, every other procedure Emma has undergone has been easy on her. This is the first time she has really had to struggle.

I really appreciate the prayers, gifts, calls and cards. The visits have been nice, too. I want to say thank you to Donna for all the prayers and pick-me-ups!

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May. 25, 2009 - This week to have a cystoscopy and catheter replacement

Emma is making progress, though it is slow at times. She will go to ACH this Thursday so that Dr. Reddy and DR. Pathak can look around with a scope and change out her suprapubic catheter. That is the last tube really. She still has a foley catheter in her Malone stoma. The Malone is the one used to flush her bowel. We are very pleased and thankful that she has been able to wear "real" underwear and keep them clean and dry for two weeks!

Also, Emma is up and walking more and moving around better. I told her that she needed to practice her walking because she will graduate kindergarten in June. We are playing with the date for that but it will be in June. She has been a trooper and a good student this school year, having gone through two tough surgeries. Both of the procedures were life-changing events for her and for the family.

The Old Schoolhouse is having a

TOS 2 Day “Take 10” May 25 & 26. For just 48 hours, a one-year print subscription is only $15!
  Plus, as a bonus,new subscribers get 5 FREE WeE-books of their choice. It’s the TOS
  Take/Get 5 subscription sale. Only good until midnight on May 26. Click the link here

This is a GREAT educational magazine filled with touch stories, educational helps and more. It is a wealth of information to the homeschooling family and also to afterschool centers and tutors. For the summer edition, I have written an article about Emma and her homeschooling adventure that's just getting started for her.

 

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 Deals from HerbsWholesale good until 31 May 2009.

 

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Apr. 26, 2009 - Recovery at Home

This weekend has been long and eventful. There was nothing horrible but incredibly busy and not restful. I met my sisters in a central location and pick up two of the three kids that were farmed out amongst them. Emma and Shawn stayed at home because they were not up for the four-hour trip.

Emma was able to go to church this morning and was carried to Sunday School. She was glad to get to go. We put a leg bag onto her suprapubic catheter. We put a bandage around her belly to hold her tubes so they wouldn't be swinging or pulling. She is still not fond of walking or standing. It's time for her to do more of that.

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Apr. 23, 2009 - Cystoscopy @ Arkansas Children's 23 April

Today we are at ACH for Dr. Reddy to scope  Emma. He will be changing out catheters and determing what size she will need at discharge. We should see real progress over the next few weeks. We will return to ACH Spina Bifida Clinic to "decanulate" Emma.

We'll keep you posted...I'm also trying to keep Emma's CarePage updated.

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Apr. 20, 2009 - Waiting for the next course of action

We are now at home and have been for a few days. Emma did discharge on her birthday and we drove straight home! We got here around 2:30 in the morning. The Lord blessed us with good traveling conditions and restful girls.

We will be going to Arkansas Children's on Thursday to see Dr. Reddy. He will be examining her in the operating room. We don't know if he will take out tubes or if more healing time is needed. Emma has been very anxious and restless these last few days. She is afraid of pain (seemingly.)

She and her sisters had their first day of school together today. Gramie is presenting a theme of God's Animal Kingdom. The girls are enjoying her lessons. She is having a good time teaching her kiddos. I have always said she has the heart of a homeschooling parent and that's one of the reasons why I was equipped to homeschool our girls.

We will keep y'all posted (I so glad to be in the land where I can say that without stares) on what's Emma's next step will be toward continence.

Thank you for the many prayers, cards, calls and gifts!

Click on the patterns below for great, new designs from Birthday-In-A-Box

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Apr. 14, 2009 - Homeward Bound for Her Birthday

Emma is waiting on results from her blood work. She has been on a strict Calorie observation because she has thrown up a lot the last few days. She still has her PICC line and that's how they draw her blood. "No pokes" as Emma says.

The Urology Team rounded this morning and started dispelling the plan. I was real excited but Emma just wanted to go back to  sleep. She stayed up to midnight EST! We did get in a late walk that is a bit painful. I also did her site care and did her mineral oil flush all by myself.

They are setting us up with discharge supplies since we have such a long drive. Shawn would like to leave today and drive as far as we can. Everyone has been great but we are homesick and ready to get back ASAP. We will return to AR Childrens to decanulate late next week. We are thankful not to make another long trip here.

Emma's care team has ordered her a cake for today. What a sweet treat. I am going to get some breakfast and start packing on this side. Yesterday, I packed up the house so Shawn wouldn't have to do that. I'll keep everyone posted on our progress today.

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Apr. 11, 2009 - Family Togetherness for Lexi's 2nd Birthday

The ban was lifted yesterday on siblings under 14, so we ALL made it to Emma's room to celebrate Lexi's birthday. We had Gramie's gift which was a Springhill Collection Doll named Stacy. She's a pretty little red head and looks very much like AG Felecity. My new friend, Donna, sent many goody-gifts for the girls. Today they each opened a deck of cards for party favors. Then they played for a while and eagerly stopped as we offered them each a piece of cake.

That's right, Emma is being offered food and drink. She's not really interested in trying anything unless it's chocolate pudding or sausage. We are really encouraging her to drink. She has made many improvements. However, she is still very anxious and having some pain. She likes seeing her sisters in her room, but she doesn't like their clamor.

Dr. Reddy spoke with us yesterday about the steps to take Emma home. Right now we are looking at 13-15 April. They are weaning her off of her TPN and have started clamping some of her tubes. She is having lots of bowel movements. She is also frequently having little bouts of throwing up. We think she's eatingdrinking too much to fast.

We are thankful for her progress. We are thankful for the chance of everyone getting together. We are praying for less pain for Emma and more rest for Shawn and myself. We are praying that the other girls will be understanding of Emma's condition and find balance as far as attention-seeking goes.

Check out Emma's CarePage, too....

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Apr. 6, 2009 - Fixing the Car

The car is being fixed. We hope it will be ready today. Emma has had a busy day. She got a bath and a good hair brushing. She took a handful of steps and sat up for a while. She's had her surgical site cleaned once today and two more to go. (We have to do that 3X daily and it's not her favorite thing.) One of Dr. Reddy's partners came in and said Emma was doing great. I spoke with a discharge planner about setup for our trip home. Maybe she will be discharged by the middle of next week.

We'll keep you posted....

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Apr. 5, 2009 - Recovery: Day 3

Sorry, I am a little behind on my writing, again....Lots of little things have piled into to larger things that have kept me from writing. It reminds me of laundry. For now laundry is another of one of those little things.

Emma is progressing nicely. She is sitting up more and for longer periods of time. She is telling us that she's thirsty. She's asked for sausage a few times. She is beginning to have more awake time. She has played some with her dolls. Tonight I got out the days of the week magnets and she ID'ed today as Sunday. I thought that was marvelous.

She was able to open some of her mail today. Thank you Gramie for the goodies. Donna, we want to thank you, too! Emma loves the lamb (it's minky soft) and looks forward to eating the Hershey bar. Deb, Dewayne, & Jared, we are really enjoying the cards. I also want to thank everyone for leaving, notes, emails and messages. We may not answer all of them in a timely manner, but we reading them and listening to them. They are such a blessing!

The other girls are doing good, too. Macie was able to finally spend some time with Emma. That was good for both of them. As Emma's strength builds, she will be able to go downstairs and see all of her sisters together.

Emma is constantly being checked by her medical team, but Dr. Reddy will see her Tuesday. Hopefully we'll be able to measure how much longer her stay will be as well as what to expect next.

OH, OH, OH! I almost forgot to mention that we got a two-day pass to the Creation Museum. I took the girls today and Shawn will take the girls tomorrow. It was awesome! Lots of sweet and caring people there. The exhibits and the information there is great. They have a great bookstore, too, and they were having a -20% sale....

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Apr. 3, 2009 - Recovery: Day 1

Let the healing start. She has spent the night in the PICU. She has been well taken care of. They made me a bed but I went to our home away from home to be with Shawn and the girls and get a different type of rest. God blessed me with rest and renewal.

Shawn stayed with the girls and I took off alone this morning. I found Emma more alert and wanting to know where everyone was. I took some video of the girls this morning. Then I showed it to Emma when I got here.

I have to wash clothes this morning. I had to wear my lounging clothes (you know I get to lounge a lot) and a sweatshirt to the hospital this morning. After I had been here for a while Emma let me know that she was very concerned about her underwear as well as what her doll, Lindsey. was wearing.

It was stormy last night and we had very limited communication with everyone. It was very nerve-racking.

Hopefully, they will be able to move her to the floor this evening because they were able to take out her breathing tube early on. She is not very comfortable, but to be expected.

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Apr. 2, 2009 - Surgery Day

Today is the day. Today is surgery day. They did an EKG, and checked her out one more time. Shawn and I have appreciated mobile phone service today. We prayed together over the phone and we prayed with Emma even though she's so tired.

This the first time she has had surgery and Bro. Richard hasn't been with us. It is nice to have your own pastor with you. We knew that this would be one of the downsides of having surgery this far away. Macie and I  talked each other to sleep last night. This is also the first time that Emma has been in the hospital and she has not been able to see her sis.

We will be giving updates today through Emma's CarePage.

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Apr. 1, 2009 - Another Busy Day

 

Today was alright, but frankly, I'm tired. Emma had lots of "stooling" last night and even more today. She hasn't been resting just passing through exhaustion. Everyone has been so kind to her and to us. I've been a bit homesick, but she's been fine. This morning she was glad to see Dr. Reddy's intern come in this morning. She was so tickled.

So many people have called and written. It has been great. It's neat when the circles in life start to bump into one another. With this in mind, this has helped me with my homesick for homebody life.

Shawn and I switched places after lunchtime. I took the girls to the museum and Shawn had to tend to poop and Emma. He has really been great through all this. He's trying to find out about surgery tomorrow. I'll post more as we find out more...

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Mar. 31, 2009 - Day 2 - In the room....a busy, busy day

MY day started early this morning, but that's a whole other story. Shawn & the other girls dropped Emma and myself at 6:50 this morning, After telling all the folks we had arrived, she successfully accepted a PICC line by 9:30. (A PICC is an intravenous line that leads to the Superior Vena Cava of the heart) This is great because it means no needle sticks. Emma's had this before and it works well for her. Later in the day an NG tube was placed.  She hasn't liked that very much but she is able to drink with it in place.

All her meds and fluids are going through the PICC line. She's taking NuLightly (aka GoLightly which is the BIGGEST understatement known to man) through the NG tube. At least she does not have to remember its nasty taste or chug-a-lug that stuff. I told her it's worth the trade of an NG line, but she's not buying my brand yet.

Old bedtime skills came back to me as I made my loveseat sleeper bed. My mom saved the day, actually months ago when Emma had her ortho surgery, by buying me Vols 1 Bible Word Search & Bible Cross Words. While repacking for the hospital, the smaller Bible didn't make it to my purse. Also, there was not a Bible in the room. Thankfully, in these puzzle books are passages of KJV scripture printed. I read Eccelesiastes 3:1-8. Then I did a puzzle with the scripture reference being Matthew 6:25-34 (I'll have to read that later) and the title, "The Cure for Anxiety." I appreciate you, Mama.

I spoke with Shawn tonight before my phone died. He told me that another batch of cookies were brought to the girls tonight. We'll have to compensate for all the deliactibles later.

Presently Emma is on a bedside commode and still disliking the NG tube. This may make for a long night. We are listening to great music. The Child Life team is so wonderful to Emma. They brought her several CD's to listen to: Newsboys, Casting Crowns, Cedarmont Kids. She also brought movies and lots of arts/crafts items. She has been showered with things to do today, some fun and some not so fun.

We are praying that:

• The bowel prep with work smoothly for Emma
• He appendix is healthy and long enough to be used for surgery
• We can all find some rest along the way

Read her CarePages summary by clicking here.

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Mar. 30, 2009 - Cincinnati, Trip Two, Day 1

Well, we are here in Cincy, as we've grown to call it. It took my ten pictures of driving into Ohio (just like I have every other state.) We found our home away from home for the next few weeks. We have a nice hostess, that made us a batch of cookies after we arrived.

We are staying at a B&B and they have let us take over the bottom floor of the house. We have settled into two bedrooms, a kitchen, living room and bath nicely. They offered us a three BR upstair or to take the second floor but I declined due to all the steps.

Emma has been nervous at bedtime the last two nights. I guess I have been, too, because I've had trouble falling asleep. We have to be at the hospital at 0645 in the morning. She had to be without food after 9 pm. The last few days we have been letting her eat whatever she wants.

We're praying that everyone will settle down and get some rest.

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Mar. 29, 2009 - Easter FREEbies from TOS Magazine! They are beautiful....

 I must share three beautiful and FREE resources that are a gift from The Old Schoolhouse Magazine.

These resources can be downloaded here:

http://www.thehomeschoolmagazine.com/Easter-Giveaway/Easter-Giveaway.html

There are no strings attached. It's a great gift from The Old
Shoolhouse Magazine.

May you have a wonderful Easter as you celebrate the gospel of Christ

1. He lived
2. He died
3. He rose on the third day and

He's in heaven and wants you to join Him there some day if you accept His gift of salvation.

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