Monday, December 28, 2009

Check out this great video!

Check out this cool video I found it on a blog of another little girl with Diamond Blackfan Anemia. It is well done and I have to be honest and say it really opened my eyes. Sometimes I forget without James Thomas' transfusions he would be dead. Thank you again to all our donors, we are eternally greatful. I think I will be donating blood sometime before the New Year. If you feel called to donate I encourage you to do so but please do not specify James Thomas when you donate. We have four donors for James Thomas right now and it is not good for his little body to be exposed to lots of different blood. James Thomas' body is getting used to these people's blood so it is very important no other blood gets thrown in the mix. However, there are LOTS of children just like James Thomas that do need your blood! Think about saving a life in 2010!

http://www.youtube.com/watch?v=yYJEK6bv8Ys

Thursday, December 24, 2009

home for the holidays

Sorry for the delay in post. It has been super busy getting ready for Christmas. We got home Saturday afternoon and my parents stayed until Sunday. The past few days James Thomas and I have been shopping shopping shopping. We are on our way to spend the weekend with James' family. It is wonderful to spend Christmas with family. We are truly greatful for all the love and support. This is a very special Christmas with our precious son! Enjoy your holiday and we will update more in a few days.

Thursday, December 17, 2009

Just a little update

I am sure many of you are wondering what in the world we are still doing at the hospital, so here is a little update. James Thomas' bacterial infection came back as MRSA. This is a bad type of infection to have and is difficult to treat. They have pulled his pic line and replaced it with an IV. This was not a pleasant experience because they blew two veins before they got the new IV in. My poor little baby was screaming and crying. Luckily, I was not here so the wonderful nurses got to tackle that ordeal. The best thing about babies is that they don't remember. James Thomas was playing and smiling within 10 minutes of the procedure.

We are staying here to get antibiotics until Saturday. They will also check his counts Saturday morning to see if he needs a transfusion before we head home. The plan is to wait until after January 1 to put in a port. This will be an outpatient surgery and will go in his chest. They say it has a less likely hood of getting infected and he will be able to bathe with it in. This will make bath time so much more fun at our house!!!! They will give us more details later. Please pray his counts stay good because if they have to transfuse before surgery he will have to get another IV and they are so hard to do with his little veins.

Today Santa came to see James Thomas. He was sleeping so Nancy was able to capture the awesome picture below. This picture is priceless as we will always be able to use it during this special time of year. How fun for him to think Santa was standing over him as a baby. Great job Nancy on capturing the picture.

Two players from the Houston Dynamos also stopped by. The Houston Dynamos are the professional soccer team in town. They absolutely LOVED James Thomas and took pictures with him on their own cameras. SO CUTE! Stuart Holden is one of the players who came by. He spends a lot of time up at Texas Children's visiting the kids. He has been nominated for the Jefferson Award so if you have a free minute go to this website and vote for him!! He is the player dressed as an elf below! http://houston.mlsnet.com/t200/community/awards/

We were supposed to celebrate Christmas this weekend with my family because this is our year with James' side. However, we are up here instead so my mom and dad are on their way to Houston to spend the weekend with us. I am excited to see them. Nancy was a huge help when she was here so they have big shoes to fill!!!!

That is all for now. Our spirits are still good and we have lots to be happy and thankful for. Thank you for all the emails, texts, and notes of encouragement. The chaplain came in yesterday and asked me how do I handle all of this so well? I told her we have the most amazing support group. It is the love from all of you that keep us so positive!






Love,

Tuesday, December 15, 2009

Christmas came early in room 926!!!!!

This is going to be a quick post but I will write details tomorrow. Melissa is here and we are having a slumber party but before we turn in for the night I wanted to get our pictures up and a quick video. Today was filled with lots of gifts and visitors. The Continental Pilots came by and brought James Thomas a cute bear, then some sweet moms from another organization (I can't remember the name right now) gave him the cutest knit hat and they let me make a list of things from Walmart that we could use. They go to Walmart and shop for us and bring me the necessities on Friday. We are allowed to spend $25. Sweetest thing ever!!!! Then, yes then, the ultimate Christmas gift ever.......Craig Biggio delivered a Build a Bear to precious James Thomas. This is the sweetest story ever (I will write about it tomorrow). I was so excited, I just couldn't handle myself. I have LOVED LOVED LOVED Craig Biggio since I was a little girl. These pictures are priceless to me! It was so special. Mrs. Ashley Grimmer stopped by this evening with some wonderful goodies and the night ends with Melissa sleeping on our pull out bed in the room with James Thomas and me! What a special day!!!!!!

Looks like we could be here longer but I will know more tomorrow. I am just taking it an hour at a time but today was good!
Off to bed!
Love,
Lindsay















video

Monday, December 14, 2009

Another day at TCH

Good afternoon from all of us at TCH! We wanted to update everyone and you know how we are doing.

Things are going well and the blood from James Thomas' pic line is not growing anymore bacteria. This is the plan: we have to wait until we have three consecutive days of no bacteria before we can go home. Today is day 1. We are also waiting for the bacteria from Saturday to grow so we know what kind of infection he has. Right now they are giving him heavy duty antibiotics that kill most of the common infections, but once we know the exact type they will switch us to a more specific antibiotic. They said we should be able to administer this one from home. I know we will be here until Wednesday but hope we will be home by Thursday!!!!

They are also monitoring his RSV virus. He has a pretty bad cough that comes and goes and he is fighting a viral rash on his little body. They said the virus has to get worse before it gets better but he seems to be handling everything o.k. I am glad that we are here for them to keep an eye on it all.

Nancy is still here and stayed the night with me yesterday. We actually got some decent sleep which is suprisingly wonderful! She is a wonderful help! Melissa came by this morning and we went and had lunch at Chick -fil-A on the third floor. I always loving see any member of the Jones family. Some people from Walmart stopped by and brought James Thomas a stuffed dog. They are delivering Christmas gifts for all the kids which is so sweet.

It is such a small world in the hematology/oncology family at TCH. Our bestie Caroline is here right now with an infection as well, another sweet girl I met one day at clinic is also here getting chemo, and a few other families I have met on this journey. It is great to see familiar faces but also sad to see all these kids fighting off these horrible conditions. I ask you keep all of them in your prayers as well.

Speaking of prayers: I have a great praise report! We have officially switched doctors and I LOVE LOVE LOVE our new one. We had a meeting with her last Wednesday and she spent an entire hour talking with James, my dad, and I. I feel like she was able to really see who James and I are and what we need from her. She was totally open to everything we had to say and I know we are going to be a great match. On Saturday in the ER one of my sorority sisters, Hillary Skelton was on call. She is a second year resident up here. She asked who our hematologist was and when I told her we just switched to Dr. Betusch, she was so excited. She said Dr. Betusch was her favorite when she was working on the 9th floor. She even emailed Dr. Betusch and told her she knew James and I. It is such a small world and I know God has his hands over all of this. I have learned that even when things don't work out exactly how you think, DON'T GIVE UP! Since October we have had two home health nurses and now two hematologists and I the ones we have now are FANTASTIC! It is truly a blessing and I am so glad we weren't content with what was assigned to us. It is such a great feeling to completely trust your health care team. I LOVE IT!

I am going to try and post a picture of Elizabeth and Julie from Sunday. I was so disappointed that I didn't get to run with them but when I saw the picture of them in their DBA shirts I was filled with joy. It makes me smile just thinking about them running with everyone reading Knock Out Diamond Blackfan Anemia!!!! Thank you for representing us in the White Rock 1/2 Marathon!

Hope you are having a great day!
PS I can't upload the picture right now but I will try again later.

Saturday, December 12, 2009

What are the odds.......?

Please don't use this phrase with me ever again! I am kidding of course but here we are at Texas Children's on the 9th floor again with crazy odds. Let me explain......

James Thomas went in to his pediatrician Thursday for his six month check up and shots. He received all his immunizations, the flu, and H1N1 shot. I was expecting a cranky baby and slight fever so when we got home I gave him a little tylenol. At 1:30 he woke up screaming and had 104.8 fever. I called our pediatrician and he said, "104 is high for shots but what are the odds he would catch a virus or infection the exact same day he got shots!" He told me to give him motrin and if he didn't calm down go to the ER. Well, 45 minutes later he was asleep again so we decided to ride it out until morning. The next morning his fever stayed around 100 with the motrin so I thought it was just a reaction to all the shots. I didn't give him another dose around 4:00 on Friday and by 4:30 he was going crazy. His fever returned and got up to 102.6. I called the hematologist on call this time and she told us to come to the ER. James and I went to the ER last night and they ran some tests and said he probably has bad luck and has a virus too. They sent us home around 1:15 a.m. (Stay with me the story gets better!) At 8:30 this morning Texas Children's called us and told us to return to the ER because we were going to be admitted to fight off a bacteria infection in his pic line! My poor baby got shots, a virus, and an infection in his pic line all in the same day!!!!! They have started him on antibiotics and waiting for his culture to grow. Right now they are exactly sure what kind of bacteria is growing. We are settled in our room and enjoying this adventure! We have learned to be flexible and go with the flow. James and I were supposed to run the White Rock Half Marathon tomorrow with Julie, Elizabeth, and Will. I ordered us "Knock Out Diamond Blackfan Anemia" t-shirts to wear in the race! I am so sad because I have LOVED running with Julie the past two months training for tomorrow. A little shout out to our runners, "GOOD LUCK FRIENDS! We will be praying hard for you tomorrow during your run. We wish we were there to run with you!!!" We will wear our t-shirts in the hospital tomorrow in spirit! I will try and get a picture to post.

That is all for now. I will post more later. We are all in good spirits. Nancy is with us and a great help! We pray for good test results and a quick trip. We want to be home asap!

Lots of love,

Tuesday, December 8, 2009

BIG APPOINTMENT

Quick prayer request before bed. Tomorrow at 3:00 I have an appointment with our social worker and another doctor at TCH. James and I are concerned about James Thomas' care right now and course of treatments for the future. We are meeting to discuss these concerns. As of now James is not going to be able to come so my dad is coming into town. We really appreciate my dad driving in for the day but I really hope James can make it too. I absolutely hate confrontation but I know we have to do this. Our only other option is to drive to Dallas for treatment at the Diamond Blackfan Resource Center. This would be very difficult for me so hopefully we can work everything out tomorrow. Please pray for open minds and caring hearts tomorrow. I also ask for peace for James and I. It is really scary when you doubt your doctor and treatment. I hate that feeling. We do know with Go all things are possible. I was reminded of that tonight when I received these words on a beautiful James Avery charm.

Besides that we are all doing well. We met with a genetisist on Monday, tomorrow we have labs and this appointment, and Thursday James Thomas gets his 6 month vaccines. Sometimes I feel like we live at the doctor. He is having a great week. Getting the blood transfusion last week really helped. It is amazing to see the difference.

Thank you for all your love and support. I have a list of emails I am responding to so please don't think I am ignoring you if I haven't gotten back to you yet. I will get back to everyone, I promise.


Friday, December 4, 2009

5 years....









That is how long I have been married to my amazing husband. I know a lot of people say marriage is hard but I have been blessed because it has been so easy for us and I do not take this for granted! Spending every day with the person who knows you inside and out is a dream come true. There is no one else I can imagine spending my life with. I am so thankful for James. He brings me so much joy! Because we fell in love we were able to bring the most beautiful, little boy into this world. Did we have any idea that we would have a "sick" child 5 years ago? You hear how hard these children can be on a marriage and family. I am not naive and think our new journey is going to be a cake walk but I am so thankful James is the one by my side through it all. We have always trusted in God's plan for our life. I can sleep at night knowing that no matter what is to come James will be there with me to face it. We will walk this journey hand in hand. So, who knows what life will bring the next five years but I do know I will enjoy the adventure! I love you James and thank you for asking me to marry you! I pray you never second guess that decision!

On another note, James Thomas is six months old today! I can't believe our little boy is 6 months. The time has flown by and we thank God for blessing us with such a special boy. What a memorable day for our family. On my five year anniversary and James Thomas' six month birthday we are getting snow!!!! James Thomas' first snow. SPECIAL SPECIAL SPECIAL

So here are some pictures from James and my wedding day, James Thomas' birth, and our little guy in the snow!

Hope you all have a wonderful winter weekend!




Wednesday, December 2, 2009

Update



I haven't written on the blog as frequently as I would like but I am actually still awake tonight at 10:45 so I thought I would update before I go to bed.

First of all I need to say another thank you to all my wonderful friends and family out there.  You have all 
been so amazing with your love and support.  Before I went to New York I received the sweetest gift from some of my closest friends to the spa.  I am going to get some serious pampering if I can get away from the house for an afternoon.  I have gotten prayer blankets, shawls, teddy bears, books, oils, etc.  Each one is so special and a reminder of God's love.  Last night I got home from the clinic and on my stove was dinner from Melissa and Greg and tonight my doorbell rang and one of my old students was outside with his mom dinner in hand.  I am getting emails about blood donors which we still need and humbled and blown away is how I feel.  The thank you notes are coming but for now know I am so grateful.  

We are having some difficulty at Texas Children's right now and I am very frustrated.  We are still disagreeing on treatment and James Thomas' levels.  I called them yesterday because James and I knew something was wrong with James Thomas and sure enough is hemoglobin was at 6.9 (it is not supposed to get below 8.0 and remember all of ours is probably 13 something).  I am just devastated because I feel like we live in one of the best medical communities and are going to a world renown hospital but for some reason we are not getting excellent care.  James Thomas and I have a doctor's appointment every day next week, one with another doctor at Texas Children's to discuss our concern, so pray we get everything resolved.  After being at the clinic for 8.5 hours and away from home for almost 10 I was really down yesterday.  Every once in a while the reality of having a sick child slaps you in the face.  Yesterday was hard, but today was a GREAT day and James Thomas feels so good.  We stayed in our pjs until 11:00!  Melissa and I loaded the kids up in one car, ran some errands, and had lunch out.  It was nice!   

James is loving his new job and everything is great there!  V&E gave James Thomas a onesie when he was born and I took some pictures of him in it today.  He is so proud of his daddy!!!

I hope you are all enjoying this wonderful time of year.  I have my house partly decorated and hopefully it will be complete by this weekend.  I absolutely love Christmas and everything that goes along with it.  This will be the best Christmas yet!  I am so excited.

I better close and get some rest.  Thank you again for all the love and support and letting me use this blog as therapy.  God bless you all!

Thursday, November 26, 2009

Thankful this Thanksgiving


































I hope this finds you all with full bellies and blessed hearts.  Today is a wonderful day to reflect on the things we are thankful for.  This Thanksgiving I am so thankful for my precious son, husband, family and wonderful friends.  The gifts and cards keep coming to our home and it is amazing to see how much people care.  The out pour of love and support truly makes me realize the important things in life.  We may not have all of life's finest possessions but one thing we know is that we are loved and prayed for daily.  These things are truly wonderful and so we say thanks for each of you.  Happy Thanksgiving!

This evening we went to my aunts house so that my dad's family could meet James Thomas.  James Thomas got to meet his Great Granny who will be 97 on Monday!  It was wonderful to see all of them and wish my precious Granny a happy birthday.  She is a beautiful woman and doing great!!

The rest of our trip was wonderful.  I am posting some great pictures!!!!  My dad drove in Manhattan and that was quite an adventure.  We paid the high price to park and walked around awhile.  James Thomas made his first appearance in FAO Schwartz and we bought him a few things.  We had a great time!  Like I posted before the doctors here are amazing!  Diamond Blackfan is their specialty and they taught us a lot.  We now have to wait for some of our blood tests to come back before we know anything about gene mutations.  I am so glad we went up there.  I look forward to our yearly visits.  James Thomas was amazing on the flights home and I am so proud of our little guy.

I need to finish picking up my house and unload the dishwasher.  As we enter into this Christmas season I hope you cherish each day and remember the important things.  Jesus' birth was the best gift we ever received and He is the rock of our life.  I can't wait to celebrate his birth this year with James Thomas!!!

Tuesday, November 24, 2009

NEW YORK CITY

I apologize for the delay in posts. We have had a busy couple of days getting ready for our trip to New York and trying to find out everything we need for our blood donors. Thank you to everyone who offered and we are thankful for your generous gift. My Houston donors, we will be getting you all the information next week.

We are in New York meeting with Dr. Vllachos and I LOVE her. I would do anything to bring her to Houston with us. She and her team spent four hours with us yesterday. We talked and talked about EVERYTHING! I learned so much about DBA yesterday and the road we are traveling. Some of the news was very encouraging while other parts were heart breaking. I will post more information when we return later in the week. Today we are doing a lot of blood draws, even my parents have to give blood (I don't think they realized that when the offered to come with me, haha). They are so thorough and detailed, it is AWESOME!

Back tracking.....James Thomas did fantastic on the plane. I was very nervous about the flying but in the end it went perfect. We are hoping and praying for the same results Wednesday. We are actually staying at the Ronald McDonald House across the street from the hospital. Here is a link if you want to check it out. http://rmhlongisland.org/ It is very nice and the people are friendly but it is a very strange feeling to be here. Sometimes it seems like we are dreaming.

I have to go get ready for our day at the hospital. I will update more and attach some pictures soon. I forgot the adapter at home but I have gotten some great shots! Hopefully we will try to make it into the city late this afternoon! Love you all and thanks again for being apart of our journey.