Recovering

We are a little over month out since Rae’s brain surgery to alleviate or reduce her seizures. She is doing well. All of her stitches are gone, and now we are just watching her hair grow back and her scar to fade.  Her hair is not growing fast enough for her, so she just keeps wearing her hats. She does not want anyone to see her hair or her scar. After any type of brain surgery, recovery will be slow.  She and her brain get tired easily. We are doing school, but it is slow. We are going at her pace and not pushing her too much.  She is good at telling us when it has been too much.  We can usually tell the next day.  There are some memory deficits, but we are working on recovering those.  The doctors told us this is normal. I am having to slow my walking down with her. I am used to walking quickly to get where we are going, but she will remind me that if she goes to fast she gets dizzy.  She is also taking stairs carefully still.

One thing she was happy to be doing again is playing her clarinet and going back to band.  It does make her a little dizzy, but she is wanting to start practicing again.  She is also singing up a storm.

As far as results from the surgery, we will not fully know anything for 6 months or more.  They will not start reducing any meds for a while.  Things we do know – she is happier (other than normal pre-teen angst), giggles because she thinks Hannah is funny, and eating like crazy.  She has not had any seizures since the surgery – PTL! She is able to read longer without stops or “blips” from her brain.  Her Lego ability has not been deterred either.

We are so thankful and praise God for how well her recovery is going. We just keep waiting to see how well she continues to improve and will progress.

Feliz Navidad 2016

Our family would like to wish you the very merriest of Christmas. God has blessed us more than we deserved. It has been an interesting year for the Dear family.  We have traveled across the South a couple of times to see family and to have a little vacation time.  We entered our 12th year of homeschooling this school year. The older girls split their time between homeschool classes, classes at the local high school, and college classes for Hannah.  I am thankful that Hannah can drive herself to her classes.

Here are a few highlights from our family this year:

Noel is in his 11th year as senior pastor of FBC Heath. God is blessing our church and looking forward to the new year. He is also half way through having is doctorate degree from Southern Seminary.  I am very proud of how far he has come in his education, and we can’t wait to see him walk across that stage one day.

Hannah is a senior in high school this year.  She was co-captain of Granville High School girls tennis team and also earned her varsity letter playing first doubles. She is still excelling academically having been inducted to Cum Laude Society at GHS as well.  She is busy with her all of her classes and as well as working on all her college applications. She is excited to be accepted into one of her college choices – University of South Carolina. Hannah is still active in her musical pursuits of piano, flute(where she made district honors band), piccolo, marimba ensemble, jazz band, homeschool band, and steel drums.  Another activity Hannah is pursuing is journalism. She is the new editor of the school paper, and has had several articles published on their website as well as in print form.  One big this she has coming up is the Ohio Distinguished Young Woman scholarship competition in February.  She is representing Licking County and is very excited for this opportunity. It is just hard to believe we will be planning her graduation party soon.

Emily is a sophomore.  She just recently got her driving permit and will beginning to drive – watch out! She is keeping us busy with all of her bands.  She still loves playing her trumpet and is becoming quite accomplished with it.  She is currently playing in two bands – Granville High School Symphonic band (3rd chair) and homeschool band(1st chair). As if these two were not enough, she is in the jazz band for both Granville and the homeschool jazz band. Like Hannah she is in the steel drum band as well too.  As a result of her love for music she has been accepted into two honor bands this year – Ohio University and Cedarville University.  Currently she is working diligently on her trumpet solo she is taking to solo & ensemble this January.   In addition to all the music, she is also on the GHS girls tennis team this year as well.  She got a lot of playing time this year in singles and doubles and earned her varsity letter as well.  She would also like it to be noted that she did challenge up to and make 2nd chair in band, but because of a minor technicality she is still at 3rd. She is happy at 3rd though. One other exciting thing Emily was part of this year was spending 6 weeks of her summer with the IMB’s Endeavor program serving in Southern Mexico.  She really loved her time there serving God and ministering to the local people. She is hoping to go back this next year.

Rae is still making great strides in her reading and math.  She still works with a reading specialist and math tutor. She may complain about having to go, but she looks forward to Fridays with her friends there. She has really developed a love for science and looks forward to her little science co-op.  She is also enjoying her art co-op with Ms. Lynd and Ms. Krumm.  She is quite the artist and loves to draw manga characters.  This school year she was able to start beginner band.  Rae is learning the clarinet and is doing really well.  She has had a challenging year medically with the increase of her seizures.  This month she had epilepsy surgery to help reduce or eliminate her seizures. Everything went well, and we are happy to be home recovering.  We are thankful for how well everything went and praise God for it.  It will be at least 6 months before we will begin knowing how effective the surgery was.  That had to be the scariest day with any of our children. She went back around 7:30 am and we saw her at 6:00pm.

I have had quite a busy year between homeschooling, photography, and doing the farmer’s market.  HER Baking Co or also know as “cinnamon roll lady” had another great season at our local farmer’s market with many repeat and new customers.  I was blessed to have several weeks where I sold out.  I am teaching art again to our teens in our homeschool group. It has been a great year with a smaller group where we have been able to focus on making art as well as art and music appreciation.  Like my girls, I am still involved in our homeschool band playing the clarinet as well as our adult steel drum band, Pandamonium.  We are all looking forward to going to Virginia Beach in May to an international competition. I am still accompanying different people and choirs as well as still playing on the praise band at church.

This year we have learned to trust God more, and that He is bigger than anything we can ever imagine.  We praise Him for all things great and small.  He is truly a Good, Good Father.  We wish everyone a Merry Christmas and that you experience the joy of this season and seek Christ more in the coming new year.  

Rae Update

Here on World Adoption Day I thought I could give you a little update on the little.  This summer we spent a week in the hospital to see if Rae would be a candidate for epilepsy surgery. This was scary because, how do you decided to allow your child to have brain surgery. In addition, to the stay in the hospital, there were many scans and testing.  As the doctor called it – “million dollar testing”.  After all the testing was done, we had to wait for results.

All of Rae’s info for testing was presented before a room of doctors to see if she could have the surgery. There were so many questions. Would we? Would we not? How do you make that decision if it was left to us?

We chose to seek the one who could best help us make the decision – GOD! We put our faith in Him. My prayer was that the decision would be black or white – yes or no – simple.  God has gotten us through all the ups and downs of all of Rae’s needs – why would He not be here for this decision.

It was time to meet with the doctors to see what their recommendations where. God came thru – after meeting with her doctor the decision –  as hard as it was – it was basically made for us. We said yes to the surgery.  Are we happy our daughter has to have surgery, no, but it is the best for her.  Is she happy, no, but she knows it will either eliminate or greatly reduce her seizures.  The surgery is to help save her brain function and to improve her memory.  As she has gotten older, her seizures have increased in amount and frequency.  As we discovered, each seizure was actually doing damage to her already damaged brain.

The surgery will be done at Nationwide Children’s Hospital next month.  We are nervous, but we have so placed our faith in Christ. Whatever happen, He is sovereign and will get us through it all. Our prayer is that God will be glorified through this.

Hello there…

I know I have been a little absent around here, but I just have not been able to think of what to write about.  We have not done anything too exciting. Here is a quick list of what has been going on with us.

1. high school band concert  – It was Emily’s first concert with Granville High School. They did an awesome job, and we are looking forward to the next one.

2. last week of this session for the little one’s swimming lessons.

3. hematology appointment for the little one – standard appointment with nothing new to report. numbers are good.

4. pain clinic for Hannah – not too encouraging but I did make her happy with a strawberry & creme frappuccino.

5. Friday night fun with the little one – they big girls were at teen night and we took the little one out for dinner and games.  we tried a new food for us – guacamole. i know, we really liked it.

6. Emily and I were back at the farmer’s market. She had been off because of various commitments and I took off for the little one’s birthday.  We had a good week. Emily learned that granola sells quick at the market.

7. Hannah was inducted into the National Honor’s Society. She was not sure if she would make, but she was very excited that she did.

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I picked up these shoes for a steal this week. They remind me of shoes my dad use to where when I was a kid. It was a sweet memory.

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Emily in her dress she was so excited to wear at her band concert.

 

 

Happy Birthday Little One

It is hard to believe that the little one is now in double digits. It was just yesterday that we were waiting to travel to China to get her.  She has come so far in the last 4 years of new experiences. Birthdays have been one of them.  We do not believe she has even known what a birthday was before she was in our family.  Her first one with us was a little hard to explain, but here we are almost 4 years later, and she has fully embraced what it is.  She knows when all of our birthdays are, and she especially looks forward to planning hers out.

This year was a big one – turning 10.  She planned out what all she wanted to do for her birthday. She wanted waffles with fruit, her and her sisters to put on a My Little Pony show, cake pops, dumplings and spicy noodles. Her birthday was originally on a crazy busy day, but thanks to the Lord and some bad weather – we were able to make it all work out.  We had a day of celebrating her. It was fun watching her truly embrace her birthday and enjoy unwrapping her presents.

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enjoying her pink cake pops

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the weekend kicked off picking Asian pears @ Lynd Fruit Farm

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getting some new friends from Build-a-Bear

 

Quick Health Update

I thought I would give you a quick update on the little one’s and Hannah’s health.

At the beginning of the summer the little one started on a new medication called Sirolimus to see if we could prolong the time between IVIG treatments and hopefully eliminate them.  When I talked to the nurse they told us that they were getting good results with this medicine. We were nervous about trying something new, but we knew she was ready for a break from all the sticks and hospital stays. So far it seems to be working.  She is not needing weekly finger sticks unless we think there is a need for it. We do know she is not a therapeutic level yet, but she is on her way. We go back in a week to check to see how it is working.

Her seizures are still pretty much under control as well.  She has had 2 episodes since we have gotten back from our trip. We think they happened mostly due to her growing up. Sadly, because of this they had to increase her medication. She is such a trooper with all the medication she is having to take.

Hannah is doing ok as well.  It has been a year since we started on the journey to figure out what is going on with pain issues.  A year later, we still do not know.  She works through her pain daily.  She has played through it during her tennis matches. She is also still going to the pain clinic at Children’s. She has good days and really bad days. We pray that God will miraculously intervene and take her pain away. We are not sure why he has chosen her to go through it, but we do hope God will use it in some way. She is doing her best staying active and not letting the pain take over her life.

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Mom Blogger

I have been writing in the blog world since April 2006. It was under a different name, but last year I decided to merge the family blog and our adoption blog into one site.  It was tough keeping both sites updated. My site has gone thru many different looks, with the main one purchasing my own domain name.  Some days my creative side comes out and I want to change the look, but some days I just need to settle on one and go with it.

I know readers have come and gone over the years. Thanks to the ones who have stuck with me and my crazy writing or lack there of.  I do enjoy writing (somedays) which is surprising since I didn’t enjoy too much in high school.  It allows me to get my thoughts out and to have an account of what out family has done.  Writing this blog and keeping it updated is one of the things I am hoping to be more faithful in doing.  It is something I am making time for.  I’m excited to see what it may turn into in the future.

I am trying to do some more interesting things with my site, of what I am not all sure.  Right now I am just trying to get my words and my thoughts out, and pick up some new readers.  One thing I am hoping to do is more product reviews and recommendations. I have a couple in the works with maybe a giveaway or two.  I hope to encourage families who are thinking of adopting or who have already adopted. I also want to encourage moms and especially homeschool moms.  Please stay with me, and share my website with your friends.  Leave me comments. I would love to hear from you.

IV Frustration

A big part of this summer has been a much needed break from anything to do with medical issues. I worked really hard not to even have to pick up prescriptions while we were on sabbatical. We did have one blood draw while we were gone, because we want to make sure it was ok for the little one to ride rollercoasters. That was all in a 6 week stretch. It was wonderful on everyone.

When we arrived back in town, it was time to get caught up on medical tests.  We also had doctor appointments and other appointments to schedule.  Rae’s CBC was trending down, which is no fun.  We could tell due to more bruising and low energy. So, we knew an IVIG would be coming, but we tried to wait as long as we could.  This past week we noticed she had more bruises, and she was embarrassed about them.  We knew it was time for an infusion. We are thankful that it has been 2 months since our last one.  This has been improved with new medicine she is on.  We are hoping the medication will eventually keep her platelet number at a much higher number than it usually sits. Right now it is just giving us longer stretches between treatments.

Reducing the infusions to one or two or even none a year would be welcomed to the little one.  We have been doing them for over 2 years now, and in the last year have gotten more frequent.  This past infusion was probably the worst one she has had. Anytime she needs and IV she prefers her hand. She is alway cooperative and would watch them put it in.  This last time they came in and put the cream on both hands and on one spot on her arm to numb. We were praying they would not have to stick the arm.  They stuck the first hand and could not get it to go in – it hit a knot and would go any further.  Two nurses tried – no luck – she was hurting.  They didn’t want to try the other hand, but went for the arm – not happy. More tears. They did get it in the arm, but they were worried if it would stay. It did at least for a little while.  We were about 3/4 of the way thru the infusion when we noticed her arm getting bigger. (Infusions take about 4 hours)  She said her muscle was getting “strong”. At this time she was getting the full amount being infused. With IVIG they have to gradually bump up the amount you get as to not cause the blood pressure to rise too much.  We got the nurse to come in and we realized that the IV must have had a leak and the fluid was going into the tissue.  Guess what – IV has to come out and she has to be stuck again.  My heart ached for her and on days like this I hate that she has to go thru this.  I just wanted to take her home.  Thankfully, she still had the cream on her other hand and were able to get a new IV in.  She was ready to be done!

Her nurses were great to her. Due to being frequent fliers, we know many of them.  Thankfully when she was stuck the 3rd time she had the nurse who is the best at sticking her. I was sad we didn’t have her the first time because she was working in a different area.  Her nurse did get her a toy, which helped.

So, after the infusion not only were her arms covered in bruises, but now she had one arm bigger than the other.  It was no fun! I didn’t tell her, but on the way home I had already decided to get her ice cream – black raspberry chip in chocolate waffle cone from Whit’s – it fixes almost everything. We will find out this week how her numbers are.  We are praying that it will be a while before we have to get another one.

Checking out her JoyJar

10 Years

When you saw the title, you think – celebrating marriage or birthday? No. Ten years ago our family moved to Ohio.  It is kind of strange how I remember when we moved here, but it was the same time Hurricane Katrina was bearing down on the coast of Mississippi and Louisiana. We moved out of AL before the hurricane hit the coast.

the girls were so little when we moved here

10 years ago – the girls were so little when we moved here

Moving out of the South was a big change for us.  We had been married for 10 years and had 2 girls.  We had spent all of our lives in the South, but God chose to move us out of comfort zone.  While many may be scared of moving to a totally different area, we were not.  It was new adventure for us. The girls actually thought we were moving to Idaho or Iowa.  They had never really heard of Ohio till we came here.

We started talking with our church in the spring of that year, but we did not tell our girls because it would be hard for them to understand.  We had to be a little creative in how we told them, especially because they were getting to ride on an airplane for the first time to come to Ohio to visit with the church. They had never been part of a church move before.  In our last church move I was pregnant with Hannah.  They only knew Alabama and their friends there.

In the last 10 years we have been thru a many things – good and not so good.  Some of my favorites –

  • CFE – Finding this wonderful homeschool group has been the best thing. All of the parents and kids in the group mean a great deal to us and our girls. So many memories and experiences we have had and done.
  • Our church – They are a wonderful group of people who love us, pray for us, and miss us when we are away. It has been truly amazing to do life with the people of our church. We love you!
  • Blessings – I could write multiple posts on the blessings God has given our family, but God has really been so good to us more than we deserve.
  • Adoption – God chose to truly burden our hearts about after we moved here. It was truly one of the best blessings we have had outside giving birth to our two girls.
  • Travel – Living in almost the middle of the country, we can get to many fun locations easily.  We have been able to see some new and exciting areas we would not have been able to do if we didn’t follow God’s leadership to move here. If we didn’t drive to some of these locations, flying was often cheap and easy.

The past 10 years have been really great. We have often said that we could spend the rest of our lives here if God so chooses.  The downside of living here is that our girls have not been able to grow up around their grandparents and extended family.  That is one thing many ministers’ families have to deal with.  It comes with choosing to follow God’s leading and go where He wants you to go.

Our family has grown in so many ways over the past 10 years. We are looking forward to the next 10 or more years.

Her Biggest Advocate

I do feel it is true that we are our children’s best advocate.  We are with them everyday. It is like the saying “Mom knows best”. We do. I can tell when my child is sick. I know when they are hurt. I know the difference from regular cry and a cry when they are truly hurt. I know my child. In the Bible it talks about how God hears our voice like the shepherd know the cry of his sheep.  I know.

I have always sought the best for my children whether the best dance teacher to best school curriculum to meet their learning abilities. I am not a helicopter mom. I do allow them to fail, but I will come along beside them to help. I want to give them the best opportunities to allow them to succeed.

Since the little joined our family, I have learned that I need to be her voice sometimes.  She may have only been with us for almost 3 years, I know when something is not right.  I have learned that I need to be her advocate in her healthcare and in her learning.  She has been through a great deal since she has been here.  I want to give her the best opportunity to thrive and learn.  I have learned I cannot do everything for her, and I sometimes need help.