Friday, October 30, 2009

Happy Birthday Lindsay!

Happy birthday sweetheart! . . . I am truly blessed to be your husband. Your joyous attitude, caring spirit, and loving demeanor are evident to all persons you encounter. Thank you for your steadfast faith and strength over the past few weeks. I look forward with joy upon the many triumphs and trials God has in store for us.

Happy birthday Lindsay! I love you.

James


Speechless

If I haven't trusted God's plan for my life in the past I am reminded that he knows exactly what is best for us.  I trust Him oh how I trust Him!!!!

Last night I went to dinner with some great friends and Kari Roe gave me a gift.  She said not to open it until I got home and that it was from everyone at Bush.  I quickly thought that was so sweet but didn't think anything else.  Little did I know I was about to be knocked off my feet.  

Let me jump to the beginning of this story.  I was 23 years old, graduated from Baylor, engaged to James who had a job at Conoco Phillips, and trying to find my first teaching job in Houston.  I had always wanted to work with low income, intercity kids.  I remember being in Waco on the internet applying to so many school districts and individual schools.  I had a few interviews lined up, one with Bush Elementary, but there was this one job fair that was mostly low income schools on the Saturday before the Bush interview.  I remember telling James that if they offer me a job on Saturday I am going to take it and cancel my interviews.  After hours at this job fair and waiting in line after line I turned to a college friend and said, "Thank goodness I have that Barbara Bush interview this week because no one here is even giving us the time of day."  This man behind me said, "Barbara  Bush in west Houston?  Why are you here?  I have tried to get an interview there for years.  It is a wonderful school.  Don't waste your time here."  Well you see for me and my plans Bush was not the perfect school.  It wasn't what I wanted to do.  Isn't amazing how God doesn't always do what we want!  For many people intercity is God's plan for them but God had BIG plans for me at Bush.  I was given a job teaching 3rd grade and the rest is history.  The people at Bush are amazing, the families there are wonderful too.  I can't tell you how many emails and messages I have received from old students' parents.  That school is an extended family to me and their love and compassion is amazing.  I miss the people there tremendously but I do know God has a new plan for me.  I am so thankful for my five years there and the love that has been poured out to me.  

So back to the first part of the story.  I come home from dinner and start opening my cards.  I happen to save the Bush one for last.  Inside the card was message after message from all the wonderful people who work up there.  The notes of encouragement and love made me speechless.  Everyone saying they were praying for James Thomas.  AND THEN TO TOP IT OFF........there was a GENEROUS gift card to a spa for me!  I am tearing up as I write this now.  I can't believe they did this for me!  I am so not worthy yet thankful. 

If any of you from Bush are reading this, I love each of you so much.  I thank God for his plan for my life which included Bush Elementary and trust this new journey will turn out just as well.  I am coming up there next week so be on the look out for one cute, little guy and a grateful mom!   

Thursday, October 29, 2009

What Diamond Blackfan Anemia means for the Garretts

Diamond Blackfan Anemia (DBA) is a rare blood disorder.  In DBA, the bone marrow does not make enough red blood cells that carry oxygen throughout the body.  DBA is usually diagnosed during the first year of life.  There are about 25-35 new cases of DBA per year in the United States and Canada.  DBA affects both boys and girls equally and it occurs in every ethnic group.  The anemia was named for the first two doctors who documented cases of the disease. 

I know people have asked how we ended up in the hospital or even knew something was wrong.  We went to our regular four month check up with the pediatrician.  At the very end of the appt. he looked under James Thomas' eyes and thought he was really pale.  He told us he wanted to draw blood to check for anemia.  We didn't think anything about it and thought worst case meant James Thomas taking iron supplements.  Oh how we were wrong.  Dr. Pielop called us and told us his hemoglobin was at 3.2 and we needed to go to Texas Children's Hospital.  When we got to Texas Children's it had dropped to 3.0.  The normal range 9.5-13.5.  We are so thankful for Dr. Pielop because we have learned many cases are never diagnosed.  Since red blood cells carry oxygen through out the body we believe some of the SIDS cases are actually a blood disorder never diagnosed.  James Thomas' levels would have dropped and oxygen wouldn't have gotten to his brain and heart and he would have died one day in his sleep.  Our next appointment with the pediatrician isn't until December and he may not of made it that long.  It reminds us that we need good pediatricians.  If you aren't happy with yours call me and I can fill your ear about how awesome Blue Fish Pediatrics is.  Luke uses another pediatrician in this practice and he has been a true blessing for the Jones'.  We LOVE BLUE FISH!

To treat patients with DBA there are two common options:  corticosteroids and blood transfusions.  Corticosteroids is one of the most successful treatments for patients with DBA.  There are major side effects that come with using these drugs for a long time.  I don't want to list all of them but please continue to pray about this aspect of his condition.  Our doctor on Tuesday told us we would start this treatment after his six month immunizations but today James was on the phone with the Clinical Research Coordinator from DBA Registry and they don't start steroids until one year.  This disease is so rare and there are no set guidelines for treatment, SCARY.  We want to do the very best thing for James Thomas and are realizing we will have to do LOTS of research to make sure he is getting the best care ourselves.  So, if he doesn't respond to the corticosteroid treatment he will do blood transfusions every 3-5 weeks.  This would lead to a whole new set of side effects and he would only be able to do the transfusions until we get him a sibling match to do a bone marrow transplant.  Yes, I know you are thinking, "Wait, you don't have any other kids."  This is something else we are learning and working on.  We meet with a Geneticist in early December.  There is a Leucine trial but we don't qualify for it.  You have to be two years old and transfusion dependent.  We will pray for success here and maybe in a year and a half James Thomas may be a candidate.  

I know this is a lot of information but I thought it would be good to let people know what is going on and what is to come.  We are going to upload a link to the website soon.

SO, what else has been going on????  Yesterday, we went to the pumpkin patch with some of our friends.  We had so much fun getting the kids together and taking some pictures.  Julie had everyone over for a wonderful lunch and play session.  I am so blessed to live close to great friends that I have known for so long.  Most of them went to Baylor!  We all live in a one mile radius of each other and it is so much fun!!  

One of our dear friends from church, Mrs. Ashley Grimmer, ordered some wonderful prayer bracelets for James Thomas and Luke.  They say, "Praying for the Besties!"  When Melissa and I were pregnant we would talk about how the boys would be best friends whether they liked it or not.  So, sweet Ashley had the bracelets made.  I will set up a way to let me know if you want one soon.  Then we can start mailing them out.  Every time I look down at mine I say a quick prayer of healing for James Thomas and Luke.  This is a wonderful reminder!  Thank you Ashley!

We have a fun filled weekend ahead of us.  Tomorrow is my birthday so James Thomas and I are going to start the day at our Mommy and Me music class at church.  We have missed it the past few weeks so I can't wait to spend that hour of quality time with him.  Then, the three of us are going to do some shopping and we are ending the evening with dinner out.  I am super excited!!  Saturday we have three great parties to go to.  There will be lots of pictures of Mr. James Thomas Garrett in his pumpkin costume.  (we wanted to switch his costume to that of a vampire ha ha but I couldn't find one)  His dad has a great costume too so just wait for those pics.  

We are doing well.  Thank you again for all the love and support.  The kind letters, emails, texts, calls, books, gifts, and meals have been so wonderful.  God has really showed us his compassion and love through all of you.  THANK YOU THANK YOU!  James starts his job Monday so I am really NERVOUS about that.  I have cherished and loved every minute he has been home since taking the BAR exam.  I am so happy for him but will greatly miss my soul mate during the day.  I love him so much!!!!

This post is too long.  Happy Halloween and thanks for sharing this journey with us. 

I was just reading in my new book, Jesus Calling.  This is what it said for today, October 29th.
"Linger in my presence for awhile.  Rein in your impulses to plunge into the day's activities.  Beginning your day alone with Me is essential preparation for success.  Your time of being still in My Presence equips you for the day ahead of you.  Only I know what will happen to you this day.  I have arranged the events you will encounter as you go along your way.  If you are not adequately equipped for the journey, you will grow weary and lose heart.  Relax with Me while I ready you for action."   

Hebrews 12:1-3  "Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us.  Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God.  Consider him who endured such opposition from sinful men, so that you will not grow weary and lose heart."  It is all about perspective!  Love to you!

Tuesday, October 27, 2009

Quick summary about our visit











I will write more tomorrow but I know some of you are waiting for an update from our appointment today.  We met Dr. Lakshmi today and got a final diagnosis.  It is nothing new but there is something to say about finally knowing.  He is diagnosed with Diamond Blackfan Anemia and will begin steroid therapy after he gets his 6 month immunizations.  The side effects of the steroids are awful and the unknown of which ones will affect him and their severity just brings me to tears.  I am trying to process it all and enjoy the time we have left before the steroid therapy begins. 

 I am praying about our relationship with Dr. Lakshmi.  I think she is one of the very best with this condition but her empathy was not really there.  I am such a relational person and it is hard to work so closely with someone who is more of a scientific person.  Our social worker worded it perfectly when she said that she acts more like a surgeon than a pediatrician dealing with kids.  I want the very best care for James Thomas but it is going to be hard for me to go to the clinic weekly, alone, and not have a doctor that I can express myself too.  This is going to be a life long battle and I truly wanted to become friends with our doctor.   I am trusting God to lead us in the right direction about this relationship and we will see what happens from there.  

Like I said I am pretty emotionally drained today.  I will update more details later and explain more of what DBA (Diamond Blackfan Anemia) means for James Thomas and our family.  We were given lots of information to read and we have lots to learn.  Thanks for the well wishes today and your prayers.  We could never get through this without you.  Lots of love! 


PS  We took these pictures when we returned from clinic.  We love the cool weather because it gives us another chance to wear our cute pumpkin hat!  I love this little boy so much.  He is such a joy in my life. 

Sunday, October 25, 2009

Therapeutic




Therapeutic, that is what this blog has become for me.  It is a place I can let out some emotion and feel like I am 
doing something for my precious son.  My prayer is that each time someone reads a post they stop and say a little prayer of healing
 for James Thomas and Luke.  The Jones' are battling a 
serious condition as well and my 
heart hurts even more for them now.  I now know EXACTLY what Melissa is feeling and thinking and I pray for peace for their family.

James and I got to go to Sunday School and church today.  It was wonderful to see our faithful friends and get some much needed hugs.  The lesson today hit home for James and me.  We are studying Psalm 73 and our teacher talked about things that draw us closer to God.  He said that ANYTHING that draws you closer to God is good.  I know that James Thomas' condition has definitely drawn us closer to God but it is hard to say it is good.  He talked about his wife having Leukemia and how only the grace of God got them through it but looking back it was good because it drew them closer.  I agree with him completely except that it kills me that what is drawing me closer to God is hurting my baby.  If James or I were going through this it would be a lot easier to accept but tears fill my eyes when I think about what James Thomas has and is going to endure.  It hurts, it hurts a lot.  Friday night Melissa and I were on the phone crying over all the possible side effects from the boys conditions.  The unknown is so scary and we only want the best for our boys.  They are so beautiful and innocent and I just want James Thomas to have every opportunity out there.  (The picture of us in bed was taken Saturday morning when we were still a little down.  We had the three of us in bed plus the two dogs.  It felt good to just lay there as a family and be together.  Excuse the way we look!)  But, I will keep praying and reminding myself that ANYTHING that draws us closer to God is good.  In service Dave Riggle talked about when things become too big then God is too small.  Diamond Blackfan is too big for me right now.  I have to fix this now.  Diamond Blackfan is not too big for God and I have to hold onto that truth!  I will close with the last 4 verses in Psalm 73, "Whom have I in heaven but You?  And besides You I desire nothing on earth.  My flesh and my heart may fail But God is the strength of my heart and my portion forever.  For, behold, those who are far from You will perish, You have destroyed all those who are unfaithful to You.  But as for me, the nearness of God is my good; I have made the Lord God my refuge, That I may tell of all Your works."  Psalm 73:25-28  Isn't it amazing how God's word teaches right to us when we need it.  This leads me to James and my prayer request from now on.  We are pleading God for a miracle.  We are asking him to work in James Thomas' bone marrow and allow it to start making adequate amounts of red blood cells.  We know that God is BIG and we believe he can heal our son.  When this miracle happens we won't let James Thomas be considered part of the 17% that go in to remission for some unknown reason.  But instead we will tell of God's great work and let everyone know he was HEALED by our Lord, it will not be considered an unknown remission to us but a present day miracle!!!!  We ask that you be a part of this with us so that you too can tell of His works.  

Jim and Nancy left this afternoon.  They came into town Wednesday and helped us get readjusted back at home.  We had wonderful conversations and lots of GOOD food.  We are so blessed by family and really appreciate their help.  James Thomas got lots of LOVE and we thank them for everything.  

My sweet friend Ashley stopped by today and brought us the sweetest plaque.  It says, "God said it.  I believe it.  That settles it."  She also told me of a really special thing she is working on for our Sunday School Class.  I am super excited and so thankful for her support.  I can't thank everyone enough for the outpouring of love, food, and gifts.  Yesterday, I had an awesome present from a special friend in my mailbox, we also got a cookie bouquet this weekend, wonderful cards every day and not to mention everything that was brought to the hospital.  You guys are amazing and we will never be able to express enough gratitude.  I know I am leaving lots of things and people off so please know each of you mean the world to us and it has really helped us along the journey.  

An exciting thing to announce!!!  One of my best friends just passed court for her adoption.  Karen and John Mark Hutcheson will be going to Ethiopia to pick up their son Kasheku in November.  It has been a joy to follow their journey and we are so happy that they are finally getting their son.  CONGRATULATIONS HUTCHESON FAMILY!  We can't wait to meet your son.

Enjoy this Sunday evening!  We will be going to clinic to meet James Thomas' doctor Tuesday.  Her name is Dr. Lakshmi, and she is probably going to be our new best friend so keep that relationship in your prayers.  I really like to feel connected with people, you guys know me!!!  I am silly!  Love to you all and thank you again for loving us.



Friday, October 23, 2009

No transfusions today!!!








We are very excited to report that we did not have to get a blood transfusion today.  James Thomas' hemoglobin was a 9.6.  This is wonderful news and let's us know his body is holding on to the blood.  His labs did show that he isn't making new red blood cells but today we are happy about the 9.6.  We can worry about that tomorrow.  The clinic is going to be very interesting.  We were there from 9:15-12:15 and we just drew blood.  Who knows how long we will be there when we meet with the doctor Tuesday?????  Again, I am just thankful that I am able to put 100% of my time towards James Thomas' medical needs and am not worrying about a job too.  We did meet a family today that has a 3 1/2 week old girl.  They were finding out whether she has Leukemia or down syndrome.  Pray pray pray for all these families.  It is heart breaking.

We got the camera adapter so I am going to post some pictures from our departure at TCH and our first night home.  The picture with the doctor was our resident while at TCH.  He was awesome!  He said all the other residents were jealous of him because they wanted James Thomas as their patient.  We love him for walking us through this scary time.  

The song, "While I'm Waiting" came on KSBJ today as we drove to the med center.  It really signifies how James and I feel right now.  We have been getting lots of information from lots of people and some of it can really be breath taking.  Please pray that we continue to serve and worship while we wait.  We are really anxious to speak with James Thomas' doctor.


"While I'm Waiting"  by John Waller
I’m waiting
I’m waiting on You, Lord
And I am hopeful
I’m waiting on You, Lord
Though it is painful
But patiently, I will wait

I will move ahead, bold and confident
Taking every step in obedience

While I’m waiting
I will serve You
While I’m waiting
I will worship
While I’m waiting
I will not faint
I’ll be running the race
Even while I wait

I’m waiting
I’m waiting on You, Lord
And I am peaceful
I’m waiting on You, Lord
Though it’s not easy
But faithfully, I will wait
Yes, I will wait

I will serve You while I’m waiting
I will worship while I’m waiting
I will serve You while I’m waiting
I will worship while I’m waiting
I will serve You while I’m waiting
I will worship while I’m waiting on You, Lord


What ever you are "waiting" on I pray you too will serve and worship the Lord while you wait. Have a wonderful weekend and to all our Baylor friends, we will miss you at Homecoming!  I have posted one picture of James Thomas in his Baylor gear.  He loves the Bears!  This picture was taken the Saturday before we went to the hospital.  We will be there next year, you can count on that.  Sic em Bears!  

Thursday, October 22, 2009

Flushing the line take 1

James and I just attempted our first line flush.  There are so many steps when it comes to flushing a line and it isn't easy when your precious baby is screaming through out the whole thing.  To make a long story short, after we put the heparin in the second line we saw blood.  Immediately our hearts dropped and James and I were running around the house like maniacs.  Luckily Nancy was here to pick up James Thomas!  We get a hold of the Hematology Fellow at Texas Children's and he told us we probably didn't clamp it fast enough and we got back flow.  Phew, I just knew we were about to jump in the car and head to the emergency room.  The doctor was so nice and said they would check it tomorrow at clinic.  James and I now have the emergency number programmed in our phones.  Also, a special thank you to Ashley Grimmer.  She got my message and was driving to our house when I finally got a hold of her.  I think we will have her come over Saturday for Flushing the line take 2.  

Our first day home was nice.  We unpacked everything, washed clothes, and tried to relax.  James and I went on a three mile run.  We said we needed to get our red blood cells flowing.  I love my sweet husband.  We have heard about the strain something like this can put on a marriage.  One thing I know for sure is that James and I are in this together, for the long hall, no matter what happens.  Knowing this makes it easier to sleep at night.  Thank you James for loving our family!  Jim also cooked us a great dinner tonight, and it was nice to have a home cooked meal.  

We didn't make it to the pumpkin patch.  It rained so hard last night and we kind of liked the idea of not getting dressed today.  Maybe we will get there this weekend.  I know Melissa and I are going to take the boys next week.  Stay tuned for some matching overall pics!!  I also want to post some going away pictures from the hospital, but we left our camera adapter at the hospital.  James and I will pick it up tomorrow when we go to clinic.  Someone asked me where the clinic is located.  The clinic is actually part of the hospital in the med center.  It is just the outpatient tower.  Each floor is a different specialty.  For example, Luke goes to the dermatology floor and we go to the hematology/oncology floor.  Maybe I can take some pictures so you can see what it looks like.  

Our little angel is sleeping now.  Today he had a great day and that is what matters most.  
Lots of love!

Wednesday, October 21, 2009

Quick update before bed

We are home!  We got home around 6:15 this evening, Nancy and Jim are here, and we ordered chinese.  It is nice to be home.  

A little bit about our day.....  We were assigned a social worker who will be with us through out this entire journey.  She talked about going to the schools with us when James Thomas starts Kindergarten, fighting insurance companies with us, being a go to person if we have concerns with our doctors or nurses, and just a person to listen.  I was sitting there listening to her talk and thinking to myself, "This can't be real.  Are we really going to need her through out this journey?  How bad is this going to be for James Thomas and our family?"  I just have to say it, this is scary, very scary!  I don't think I have been realistic with myself and reality is coming whether I like it or not.  

We were also assigned a doctor.  Like in my earlier post I really hope she is a good fit.  I pray she learns everything she can about his potential condition, and works hard to help us fight this.  We will meet her on Tuesday.  

We also got a tour of the clinic.  It was sad.  That is all there is to say about it.  We saw lots of kids receiving chemo and blood transfusions.  We will be spending  a lot of time here.  Our first appointment is Friday.  They said we will be going twice a week for awhile until we learn more about James Thomas' condition.  

I am not trying to be a downer, I promise.  I think being home I want everything to be better and it's not.  Nancy and I bathed James Thomas tonight and I had to wrap his entire arm in press and seal wrap.  The pic line is a visible reminder that my baby boy is sick.  It is hard to see your precious baby and know he is sick.

I am off to bed.  Nancy has offered to feed him if he wakes up during the night so hopefully I can clear my head.  

We are so thankful for all your love and support.  We could not have survived the past 7 days with out each of you.  Just knowing people were following our blog and praying for James Thomas was comforting.  Texas Children's Hospital is an amazing place.  I will pray you never walk those halls with your child as a patient but if you do God has lots of angels at work there.  They are doing wonderful work and saving lives.

Love to you all,
Lindsay

PS Tomorrow we are going to do something fun with James Thomas and I will be able to post a happy entry then, maybe some pictures at the pumpkin patch!!!!     



We are going home!

The nurse and resident just came in and told us we are going home today!  They said they might "tank him up" with one last blood transfusion but we should be out of here sometime today.  We are going on a tour of the clinic before we leave and they are setting our appointment time for  Friday.  This Diamond Blackfan Anemia is so rare they are still trying to figure out who our primary hematologist will be but there is a doctor at the clinic who has worked with it before.  We really pray that we get the perfect fit for James Thomas.  We will be seeing this doctor so much and working so closely with them I really really get nervous about who they choose.  Please pray for our new doctor.  

They said we will be at clinic all day Friday but at least tonight we will all be sleeping in our beds at home!  James' dad Papa has been with us since Sunday.  He is going back to Nacogdoches this afternoon.  I know James has enjoyed spending time with him.  We are glad he has been here. Nancy was here on Friday and went home on Sunday.  She is coming back today with Jim to help us out at home.  We are so glad she will be with us the next few days.  She is so good with James Thomas.  Another thank you to my parents who were with us and went back last night.  We appreciate all of our parents love and support.  James and I are truly blessed and we have a lot to live up to.

I was in the Family Room this morning getting a drink and a danish when I started talking with this dad.  He told me they were admitted on Monday and last night they were told their ten year old daughter has cancer.  Today they will do her biopsies to find out the exact type.  He told me he had to tell her the news today.  Can you imagine telling your ten year old they have cancer?  Our prognosis has come at such a young age that James Thomas will never know any different.  My heart aches for this family.  Thank you so much for the prayers for James Thomas but PLEASE pray for all the kids on this 9th floor.  It is a devastating floor and each day a new family is brought in.  You can see the anguish and pain in their eyes.  This verse just keeps popping in my head, "For I know the plans that I have for you declares the Lord, plans for peace and not evil, to give you a future and a hope."  Jeremiah 29:11  As we leave today I pray that we are never readmitted to this 9th floor at Texas Children's but I will pray every day for each child and family that steps foot here.  They will be brought to their knees and I just hope they will look up!

Love to all of you.  We are forever changed and your support and encouragement has made this horrible experience a joyful one.  

Tuesday, October 20, 2009

Keep your fingers crossed!!


I LOVE my Pumpkin!

    Thank you mom and dad for coming!


A quick update on our day.  They started the morning by drawing blood at 4:00 a.m.  The awesome thing about the pic line is that none of us woke up!!!  The nurse came in at 6:30 and I asked her if she drew the blood.  She said they came in and drew it and none of us woke up.  I can't tell you how amazing that is.  The worst part of our entire experience has been drawing blood.  His hemoglobin had dropped to a 7.1 so they had to do another transfusion.  They said this was expected after surgery yesterday and with all the blood they have been taking.  They aren't going to test his levels again until the morning.  The home nurse care people came by, and they taught us how to flush his pic lines.  A home care nurse will come to our house once a week to clean or do something to his line.  Sometimes this still seems like a dream.

We have had more guests today who have brought yummy treats.  It is always fun to see familiar faces.  I got to get out of the hospital for a little while.  I had a wonderful hour and half of escaping at Melissa's house.  My sweet friends Autumn, Julie, and Mandi came over and the five of us got to visit.  It was refreshing.  I also got to love on Bailey and Daisy for a few minutes before I headed back up to the hospital.

We have another praise!  We thought we might have some issues with insurance because of James starting his new job and preexisting conditions.  After many hours on the internet and phone calls we believe that we can still join a Cobra plan through HISD.  James Thomas will hopefully have coverage for this next year.  Thank you God for this light!

The plan for tomorrow is to draw another round of blood and test his levels.  They said as long as he doesn't spike a fever or something drastic happen with his levels we should go home!  He may need one last transfusion but it is looking good.  We will follow up at the Texas Children's Clinic on Friday.  We will visit the clinic twice a week for awhile but being home is perfectly safe for him!  I am anxious to get him to a pumpkin patch to take some fall pictures, but until then enjoy our little video of the pumpkin we have here!  This is a new road for the Garrett family but we are going down it and we will get to the end.  I am positive about that!   




video

Monday, October 19, 2009

Pictures from the day








Just a few pictures to capture the day.  Today was our day nurses last day to work for the week.  In fact she came in today and worked over time to be with us during James Thomas' procedure. Brandi has been our day nurse since Friday and like someone told us, "The nurses are just extensions of God's hands taking care of us."  That is exactly what Brandi did.  In fact when Melissa got here today she took her to us.  We were on a different floor and in a new area but she wanted us to have Melissa there.  The little things these nurses do make a HUGE difference.  Thank you Brandi!  We will never forget you.  

 James Thomas is asleep now and looks like an angel.  Each day James and I pick a new verse and write it and post it on the wall.  Today's verse was, "Anything is possible if a person believes."  Mark 9:28  I can't wait to see what God has planned for this little boy.  Like our blog says, "It an adventure and even being here at Texas Children's it's still a GREAT one and I wouldn't want to miss it!"

Good night!

Back in room 18

We are back in our room and James Thomas is doing great.  The procedure took about an hour and they said it went super smoothly.  We sat with him in the recovery area and when he woke up I was able to nurse him.  He was one hungry fellow.  The great new about the pic line is that they have taken out that big I.V. that looked like a cast in all the pictures.  His nurse is letting him stay off IV fluids for awhile so he is free!  We have danced around the room and turned lots of circles.  The freedom is fabulous.  

We are waiting to get test results back and they want to take more blood out of the pic line later.  James went to eat with his dad and we are trying to get James Thomas to take a little nap.  It is pretty calm now so I may try to rest too.  Thank you for the prayers.  We had an amazing peace when they took him, no tears - no sorrow!  James is a rock and I feel honored to be on this journey with him as his wife.  I love him so much.  

A little exciting news.  James' second cousin was a fabulous pediatric GI doctor in Washington DC. and has a colleague who works at Texas Children's.  This doctor came down while James Thomas was in surgery and said he is going to do anything to help us out.  He has a friend who is in hematology so he is going to get more information from him.  This is great news but the amazing part hasn't even come yet.  So, I told him about Luke.  He said his boss works on EB patients frequently and is the best in Houston.  He told me the Jones' family would not be able to get in with him and if they did it would take months.  He said that he would take Luke as his patient and then use this top doctor to do any procedures Luke may need in the future.  Isn't this wonderful!!!  He gave us his card and hopefully Melissa and Greg can get Luke in to see him.  God is good.  These things that keep happening can't be coincidence but God's hand protecting our two families.  

We will try to post some pictures later of James Thomas.  I have put him in PJs and he is being rocked by his Mimi.  Again, thank you for the love and support.  Each of you have eased our pain and cried out to God for our son.  Priceless! 




Off To Surgery

We are leaving for surgery in 30 minutes.  He did great with no food.  Please keep everyone in your prayers especially the doctors.  His levels were 8.8 this morning which is good.  I will update you as soon we know anything.  Thank you for all the early morning texts and calls.
Lots of love!  GOOD LUCK JAMES THOMAS!!!


video


Sunday, October 18, 2009

Quick update

We have had a great day.  NO PROCEDURES, NO TRANSFUSIONS, NO NEEDLES, just monitoring James Thomas and some informational talks with the doctors about tomorrow and the days to follow.  We have had lots of visitors and that has been fun.  It is hard to use our phone all the time with doctors, nurses, and other guests walking in all the time so just to let you know we don't mind visitors at all.  I don't know what tomorrow morning is going to look like and I know the surgery is on the 3rd floor so it may be hard to locate us in the morning. We should be back on the 9th floor by afternoon.  

I just had a dear friend Jordan email me the cutest thing her mom said, "As mom said B + was a good blood to have because it reminds us to "be positive!"  I love that!  More to come later.  

  and James!  (don't know how to add him to the signature)





A few more pictures!

Good morning!




Well it is Sunday morning and we have a happy baby up
 here at Texas
 Children's Hospital.  Yesterday was a very hard day when it comes to drawing blood.  After many nurses, a blood specialist, and a transport team they were still unable to get blood from James Thomas.  They said we are so lucky the ER was able to get the IV in him.  Thank you Lord for that!  Without he wouldn't have been able to do any transfusions.  They have decided that tomorrow morning they will put a port in his neck to draw blood from.  This will require us to stay an extra day or two so it looks like we will be here until Wednesday or Thursday of next week.  I am just glad they aren't trying to draw anymore blood.  We have gone back to heel prick only!  

On a happy note, James Thomas hemoglobin was at 8.7 last night!  We have gone from a 3.0 to an 8.7!  I am so proud of him and thank God for the donors of his B positive blood.  I have a whole new appreciation for people who give blood.  They just drew blood to test his levels.  This will be the longest stretch he has gone without blood so we are really anxious to see what his body does.  If the number goes up it means his bone marrow is making some red blood cells.  That is our prayer!  UPDATE:  As I finished that sentence we got a knock at the door.  The doctor came in and said James Thomas' hemoglobin is still at 8.7.  This is good because his body is holding on to the transfusion but did not generate any red blood cells on his own.  He will not need a transfusion today which is great!  They will test again in the morning and if his level drops they will do a quick transfusion before his bone marrow biopsy.  

James went home last night to get some rest!  Nancy stayed with me in the room.  The nurses are amazing and take great care of us!  I have tried to decorate his room with a few pumpkins, pictures, and some stuffed animals people have brought by.  We are so thankful for the prayers, visitors, food, cards, books, and gifts.  God has really showed us compassion and love through our family and friends!  

I am going to upload some pictures of our stay here.  I still can't believe I am on the 9th floor at Texas Children's.  I have truly been brought to my knees.

Love you,
Lindsay



Saturday, October 17, 2009

Day 3 at Texas Children's

Good Morning!  We tried to upload this video last night and the internet was so slow so we will try to do it again this morning.  Things are going well at the hospital.  The nurses all love sweet James Thomas and our tech said he was the most popular baby on the floor.  He is happy which is great and they think he is starting to pink up.  We will post new pictures later for you to decide yourself.

We do have a prayer request.  They are having an AWFUL time drawing blood.  They have tried four different times with four different nurses and they keep blowing his veins.  My heart breaks with each scream and wale.  They are calling down a specialty unit to come try again later but they want to take it from his head so I am little sick about that.  PLEASE pray that they get some blood quickly.  We are still on track for our bone marrow biopsy Monday.  They are going to test his levels today to see how many more blood transfusions he needs today.   We still have no prognosis but FINALLY today a resident told us they really think it is a condition called Diamond Blackfan Anemia.  It said that about 5-7 babies out of a million are born with this condition!  I don't see how it could be this form of anemia but they don't have any other leads right now.  We will pray for God's grace as James Thomas' perfect path unfolds.  I really don't know what to ask you to specifically pray for when it comes to diagnosis so we are shooting for miraculous reproduction of his red blood cells.  I will post more later but we won't know anything until next week.

James Thomas is amazing and so happy even in the hospital.  We love you and thank you for your support.

video

Friday, October 16, 2009

Hemoglobin score of 4.8

The nurse just came in and told us that after two blood transfusions James Thomas' hemoglobin level is at 4.8.  We are so thankful they are going up but he really needs to be at an 8.0 before they will do the bone marrow biopsy.  I learned this morning that the levels must be high because they are afraid to put him under anesthesia when his body is not getting enough oxygen from his blood.  Another concern is that they don't do these biopsies on the weekends so if he doesn't get it today he can't have it until Monday.  After the biopsy is done it takes one to two weeks to get any results so we will get to come home!!!!!  We would like to get the ball moving so please pray that his next transfusion will shoot up his levels.  

He is amazing and so brave.  He has cried only a few times.  They let us dip his pacifier in sugar water and let me tell you, James Thomas LOVES it!!  Right now I have him propped on his boppy watching his favorite baby einstein video.  I on the other hand have been crying off and on since we have been here.  PLEASE PLEASE pray for God to give me the strength to not wear all my emotions on my sleeve.  I want to be happy and smile for my baby boy.  He is probably thinking, "Who is this red eyed, blotchy faced woman?????"  I don't want to be like that for him.  

We are on the 9th floor and it is the hematology/oncology department.  Let me tell you it is so nice.  However, the niceness of it makes me sad (silly I know).  The rooms are set up for kids who are here awhile which is scary.  There is a beautiful family room but get this it is the Ronald McDonald House sponsored room.  I broke into tears when I read that.  How am I at the hospital with my 4 month old son getting water from a Ronald McDonald sponsored area????  This is what I am talking about, pray for peace please!!!  I am thankful for all the wonderful organizations out there because let me tell you it is nice!

O.k. I better close.  We will keep you posted on what is to come later today.  I promise this will soon be the HAPPY blog and not a sad one!  I do believe in that.  

Love you all,
Linday

PS I got a great text that quoted scripture, "  Be strong and courageous.  Do not be terrified; do not be discouraged, for the Lord your God will be with you where ever you go!"   

PSS  The doctor just walked in and we are not doing the test till Monday.  He will probably need 6-8 more transfusions over the course of the weekend before his levels are high enough.  We will be here through at least Tuesday of next week.

Thursday, October 15, 2009

James Thomas @ TCH (Video #1)

James Thomas just woke up from a good nap ...

video

James Thomas @ Texas Children's

Dear Friends,

We have zero cell phone reception so we will update our blog and facebook when we have time. So far, all we know is that James Thomas's hemoglobin is very low and he is most likely anemic. The hospital staff drew more blood a little over an hour ago. We are waiting for the results. We also know James Thomas will be receiving a blood transfusion this evening. Depending on results of the blood tests and transfusion, he might have his bone marrow tested tomorrow. We are being admitted for sure this evening.

Please continue to pray for James Thomas and for us. Also, please pray that his anemia is non-life threatening.