Lydia Update


The count down is ON!  Please consider donating to the American Cancer Society today!  With your donation, you will be entered to win the survivors quilt which features our very own Lydia!  This quilt could give many a families hope if then given to a local Ronald McDonald house or Children’s Hospital.  Please cosider DONATING today!

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A fresh start is here!  I am so thankful that God’s mercy’s are new every morning, ’cause I sure need them.  I love a clean slate.  I have just gotten back into town, the house is a wreck with Christmas festivities to be cleaned and I am ready to take it on.  I hope that I can give my desires over to God and only take on the responsibilities that He has given me for the coming year.  I have the habit of taking on more than I should, so I am paring back down and trying to keep life simple.

Thank you to ALL that helped get gift cards and shoe boxes to Children’s hospital this Christmas.  Abby Vandiver, a childhood (baby) cancer survivor, and her family and friends partnered with us to make this happen this year.  We did not have a shoe box party, because people were interested in giving and had too much in individual holiday schedules.  It all worked out for the best.

As for the kids on 4 Tower receiving the presents, 6 of the children were in isolation at the time were given to deliver the shoe boxes.  The nurses had 4 Tower in lock down.  They had a sterile environment set up in the hallway, so Lydia and I were greeted in the Lobby by a Child Life specialist who took our gifts upstairs and passed them out after the procedure was over.  Lydia cried.  She really wanted to see her nurses.  It is so neat that she has no aversion to the hospital, but loves the staff.  That speaks VOLUMES about the staff and God’s grace.

 

 

Oh where to begin?  It all began on Tuesday at midnight.  Lydia spiked her first fever (102.9) in over a year.  She had been seen just the day before by her pediatrician for a stuffy noses, coughs and such so when I called the phone nurse to report the fever, she walked me through steps of action to take:

  1. Give her Ibuprofen.
  2. Make sure the fever responds and goes down
  3. Go to clinic Wednesday morning to have her checked out

She said that I could call the Stem Cell floor also, just to make sure that waiting to morning would be alright.  She still has a shunt in her head, so they want to watch it for infection too.  They were all in agreement to wait and go to clinic in the morning.  THIS WAS HUGE!!!

Thankfully, we already had an appointment set up to see Dr. Cook.  Her labs looked great.  In fact, it was the first time she was not dehydrated in probably 8 months!  Her lungs sounded clear, but she definitely had a sinus infection.  We went home on amoxicillan just like a normal kid!  In the mean time she is laughing, jumping, and acting normal.

Brothers also developed sinus infections by Thursday morning.  They began Amoxicillan as well.  By Friday night we drove to a Florence to a fun family reunion.  Sounds crazy, I know, but I had cleared it with the doctors and the family and everyone was in agreement for us to attend.  Now then, I don’t have air conditioning in the minivan right now.  So we waited until the sun started going down, so that it would be cooler.  The kids pretty much napped the whole way (all but one big boy).   When we arrived, it was so exciting and fun…family, commotion, and toys.  Everyone acted liked they felt great.

Saturday morning, Lydia got up happily, but when I fixed her hair, she wanted me to rock her.  She was pretty grumpy.  She saw that brothers were going to go boating on the Tennessee River, so she perked up and got ready too.  She fell asleep on the boat (in the shade) and when the boat ride was over she was VERY cranky.  I put her to bed as she thrashed around until she fell asleep.  As we lay there, she gets hotter and hotter.  Her temp got up to 102.5, so I called the phone nurse.  The nurse was concerned mostly about the shunt since she had been on antibiotics for 3 days.  We walked through many different scenarios, but when I got her up to give her the ibuprofen, she held her head with two hands screaming “ou-wee, ou-wee!” at the top of her lungs.  So we decided to jump in the car and head back to Children’s.  Jeanette gave us her air conditioned car to travel in since Lyd didn’t need to be over heated.

The boys stayed out on the lake with grandparents, uncles, aunts and cousins.  Today they are still having a great time!  They will return either tonight or tomorrow.

Once at the ER, she had a series of X-rays and a CT scan.  Her shunt looked exactly how it was suppose to look and the ventricles looked good as well.  This was huge.  No neurosurgery!  Turns out she has developed pneumonia.  It is a very light case of it, thankfully.  Her antibiotic was doubled and then they sent us home.  How good it feels to be home.

This morning I have the crud though.  I don’t feel like I have and infection, but my body is fighting those cold germs hard.  I hope to have my energy revitalized by the time my sons return!

Thanks for the prayers.  We are so grateful.  We are trying to live moment by moment and placing each moment in the control of our Father.

Please pray for HUNTER JONES.  His mama has been friends with us since college.  Mandy has walked with me throughout Lydia’s journey.  Now her son, HUNTER, has been diagnosed with leukemia (ALL).  They are working on getting him into remission then having a bone marrow transplant.  Please, please pray for them as they are on their journey.  Mandy is updating the family blog more than the caringbridge site so that link is here. Please pray for their whole family.

I know, I know…still no picture.  Thankfully, if you wanted a picture blog you would be visualizing on some other website.  Today is my birthday, so maybe we will get some photos tonight, though the pink highlights aren’t as bright as they were before.

Have you ever walked into a trap that triggered an event in your life that cuts deeply and you were surprised by your reaction?  I had that experience when I took Lydia to the dentist a week and a half ago.  The particular dentist’s office is pleasant enough, but when I brought my three preschoolers for their appointment, Lydia was refused to be seen.  I was accused by the hygientist of not getting them a letter stating that she could be treated.  I don’t know what sent me into a spiral.  I understand that the doctor wanted to cover her bases on risk to treat her.  Maybe it was the stress of knowing that Lydia had cavities or it was the accusation of being a bad parent.  I don’t know.  You try to do your best, but that isn’t good enough.

They saw her last week, and told me that she did indeed have cavities and would need to have one day surgery at Children’s  Hospital to take care of it.  The only problem is that she doesn’t do surgery during the summer.

Grandparents are very good friends with a pediatric dentist in town, who use to teach at the school of dentistry.  He gave me a call after speaking to the Grans and was so wonderful to give me all of his phone numbers and said that we were family.  He saw Lydia the next day and agreed that she needed surgery and that it would be done as soon as possible.  She will get 4 crowns on August 3.  She will be worked in earlier if anyone cancels.  They go to Children’s every week, but right now they are booked.

Ok, so I knew that her teeth would have a weird side effect of her previous treatment,  but here are the specifics:  She has feeding issues.  You may remember that she was fed via a blood line or through a feeding tube for about 8 months of her baby life.  When she was bottle fed, I could give her a bottle while she was asleep to keep her hydrated if she did not get enough during her waking time.  Even then, she would refuse a bottle of water while she was asleep, but except milk.  I finally gave up these feedings and now when she goes to clinic she is most often dehydrated.  So much so that I am to do what it takes to make the girl drink.  I only offer her apple juice, milk, and water.  I have just started freshly pressing apples to get pure apple juice without citric acid or any sugar or anything to not hurt her teeth.    I am my wit’s end balancing how to take care of her fluid intake and her teeth.

In addition to all of this, she has GERD (acid reflux).  This too rots teeth.  The good news is that her enamel is growing normally!!!  That was a scare.  When she is put under she will get her first set of x-rays on her teeth.  I am hopeful that she has some adult tooth buds forming.  Because she had Total Body Irradiation so early in life they might not form…but there is HOPE.

Thank you for letting me share my frustration and prayer requests with you.  I am in a really good place, resting in the one day at a time aspect of life.  God gives peace thankfully.

 

What can I say?  Pinks really do have more fun!  I was a blonde up into my 20’s.  Then my hair turned brown (with grey highlights), and now I am a pink…only slightly.  It is very freeing.  Yesterday I had about 12 inches cut off for Locks of Love.  The stylist was wonderful and the salon babysat the kiddos for FOUR hours while I was pampered…and it was affordable!  The kiddos are at Vacation Bible School and Nana’s.  So I have a little time to fill you guys in on what is new in our lives.

Lydia continues to reach goals with leaps and bounds.  Her end of the summer goal was to be able to use two and three word phrases.  She has bypassed this with full sentences.  She can throw a good old fashion two year old fit, but they are not that often, and I am so glad to see her expressing herself.  She graduated from the Bell Center on her re-birthday last month.  Yes!  She is two years past transplant!  She is officially stamped “S” for Survivor!

I still keep her covered up, in long sleeves and pants even though we live in the south.  That is the one thing that continues to be crammed into my head.  We are trying to spend a lot of time outside, but mostly in the morning and late afternoon.

We are officially back at church.  We love it!  Dewey, has been a bit more skeptical about going to his Sunday School class.  I have taken him in to “Big Church” but he doesn’t last very long, even with toys and such.  Last week I taught his class and that was very helpful.  The first day of VBS, he was nervous too, but Huey took him by the hand and invited him into his class.  The church was very accommodating and Dewey loves it!  I am surprised that I haven’t been able to get more work done at the house.  I was hoping to catch up on laundry and declutter the kitchen.  All the stuff that should be done.  This morning Dave said to leave it, that I should take the morning to write.  I am thankful to be able to declutter my thoughts!

For the past few years, I have been blessed to have friends, family, and even strangers give me Bible verses to feed me.  During that time, God was so present.  He was everywhere I turned, I didn’t have to seek Him.  He is in my thoughts much of the time, but I still hadn’t really sought after Him as the manifestation of Him dimmed.  Thankfully, in January David and I started to go to a Bible study taught by a woman (ex-counselor) who God has really used in our lives to let go of things to help set us free.  Then in April, I went to Captivating in Colorado and saw God’s pursuit of me again.  In May, hubby went to a retreat and he was given a new desire for God.  Now it is June, and we have begun “Love Song”.  Which is a Bible Study on Jesus endless love for the individual…”me” or you.

I have a desire to hear from God in His Word, though I am still unwilling to pick it up as often as I am thirsty for it.  That always surprises me.  But it doesn’t slow God’s desire for me down and He calls me still.  What a wonderful God!

Pride and Prejudice has to be my favorite story.  Once David and I were married and under the same roof, he was a trooper and painfully watched all three movie versions of this epic story three Friday nights in a row with me.  Hey, he is my Mr. Darcy.

I knew I was in the right place, when upon arrival to the Captivating Retreat in Colorado, Stasi Eldridge, asked which common Fairy Tales capture our hearts as women.  The girl right behind me shouted out enthusiastically “Pride and Prejudice”.  I had arrived.

This four day retreat was nourishment for my soul.  Over three hundred women attended with expectant hearts to worship and adore the leading man in their lives…Jesus.  It took my breath away and the Holy Spirit showed up!

Why would a Christian retreat be showing clips from Pride and Prejudice and many other heart pumping movies?  The premise for the retreat is based on a book Staci and her husband wrote together called “Captivating”.  These stories that get our heart longing with love and adventure are because we are apart of a larger more beautiful and dangerous love story.  Our hearts bear the image of God and they are longing to be pursued, needed and be beautiful.

I thought it was comical that there was a pack of tissues under each seat in the conference room.  Little did I know that I was going to cry buckets of tears and have to borrow everyone else’s, because I ran out on the first or second day!

I have so much to share and so little time!  If you have never read the book “Captivating” or if you are a man “Wild at Heart”, I encourage you to do so. You may be able to pick them up for free at paperbackswap.com.  I yearn for the Word of God like I had years ago.  I am so thankful for their ministry.

Lydia went to clinic this week.  Her labs looked great!  We have to go back on Monday, because we need 17cc’s of blood to send to Seattle for her two years post transplant bleeding.  Her re-birthday is coming up quickly!  My only concerns are that she is still having slight GVHD (bone marrow rejecting her body).  It is controlled with topical steroids on her skin.  Also, her stomach has been MILDLY upset since I went on the retreat.  Gut GVHD is a possibility.    Lydia was also dehydrated.  I have such a hard time getting her to drink all that she should.  Please join me in prayer against these details.

I also have a prayer request for baby Piper.  She is nine months old now, but was diagnosed with infant leukemia (ALL) when she was only 10 weeks old.  My understanding is that she is doing well in her chemotherapy protocol, but it is a LONG road.  Please pray for Piper’s complete healing and restoration.  My heart goes out to her mother Susanna.  Please pray for Piper’s whole family that their hearts would be healed.

I feel I need to share the latest with Lydia’s physical recovery.  I took her to be evaluated at the elementary school that we are zoned for last Friday and this past Monday.  The public school takes over therapy where Early Intervention leaves off when children turn 3.  I was interviewed as well to give the therapists a bigger window than what they see during the test.  I was asked how many word’s she can say…I answered 20-25.  When my family got wind of that, I was mocked…more like 200 is what I was notified.  The problem is that Lyd can be so quiet much of the day, so I didn’t even recognize the improvement of her vocabulary over the past few months to share with the team.  This being said she scored a 75 at the evaluation.  She has to score under 77 in two areas to qualify for services.  The other score that I saw was a 95!  I haven’t gotten the numbers back for the other three tests, but the preschool teacher did not expect her to qualify since she was being tested in the 4 and 5 year old categories.

So today, David got home and took the trash outside with our two sons.  I had dinner on the table so I didn’t let Lydia follow them.

Lydia said, “outside!”

I answered, “outside?”

She said, “outside!”

I repeated, “outside?”

She said, “I want play!”

I said, “You want to play?”

She said, “I want swing!”

I said, “You want to swing?”

She said, “I want kick ball!”

I said, “You want to kick the ball?”

She said, “I want play Lucy!”

I said, “You want to play with Lucy?”

Then I said, “Let’s eat dinner first”

OK, in retrospect, I should have let her go on out, but she was really hungry.  After dinner she was able to do all the things that her mouth and heart expressed that she wanted to do.  So whether or not she qualifies or not, I know that her speech is emerging.

Thank you God for continuing to finish the work He has started.

Please pray for Lydia’s friend Caleb.  He is in therapy with Lydia and has Cerebral Palsy.  I am praying with his family for Caleb’s complete healing.  Please join with us and pray.  Believing that one day he will walk.  If you get a chance to check out his story it is amazing.  He and his family are precious.

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