May 10, 2011

Erik and I really enjoy spending time with our son...God knew that we needed a happy sweet baby, because he just lifts our spirits.  Jackson's counts are still bouncing around in the low range.  They are supposed to do another bone marrow biopsy sometime in the next day or so.  Erik and I had a 2 hour training session today.  We were taught how to change the dressing around his central line, how to change the ends, how to clean it, and how to flush the lines.  One of these days someone is going to give us an honorary medical degree. :-)  It was a lot to learn but Erik and I are used to learning this kind of stuff and we work well together remembering things and getting it done. 

May 8, 2011

On this Mother's Day I am so blessed to be Jackson's mommy.  Erik and I got to go to church this morning and it was so encouraging to be with our church family.  We are enjoying spending the rest of the day with our sweet boy.  Jackson's blood counts are up today a little because of the transfusions yesterday.  He is alert and playing with his toys.

1 Corinthians 13:7
Love... Beareth all things, believeth all things, hopeth all things, endureth all things.

Beads of Courage

These are Jackson's Beads of Courage.  He started receiving these when he was in the hospital for his heart and now he is continuing to get them due to his Leukemia.  This is a program that they have started to encourage kids as they go through treatment and trials.  They receive a bead for everything they have had to endure in the hospital.  Below the picture I have listed what some of the beads stand for.  (This is what Jackson has earned so far :-)

Black: Pokes/sticks/blood draws
Yellow: Nights in the hospital
White: Chemo
Red: Transfusions
Glow in the dark: EKG/Echo/x-ray/MRI
Blue: Clinic visits
Orange: central line/port
Beige: Bone marrow
Grey/Silver: Dressing Change
Green: Fever
Rainbow: Physical Therapy/Occupational Therapist
Aqua: Tube insertions
Purple: Antibiotics
Square Heart: heart surgery(our favorite)
Bumpy beads: challenges
Stars: NICU/CICU

May 7, 2011

We were blessed with another day of Jackson's smiles!!!  He is still eating well and has not had to have IV fluids.  We were able to take another walk with him today around the hospital.  His blood counts today were very low.  Jackson had to have a platelet transfusion this morning because his platelets fell below 10,000 (a healthy persons is about 150,000+).  This was expected at this point in his treatment.  This causes him to be more tired than usual.  He also had a blood transfusion because his hemoglobin was low.  The nurses are still loving all over him.  When we walk the halls people stop and smile at him.  He is a precious little man and an inspiration to his mommy and daddy. 

May 6, 2011

Jackson is very tired today...His blood counts are very low, which explains the tiredness...He still managed a weak smile for his mommy and daddy.  His platelet count is almost to the point where he would need a platelet transfusion.  We shall see.  Jackson had a very nice week visiting with people from our church.  I am so grateful that someone was available to love on our baby when we so desperately want to be here and can't.  Jackson is still eating pretty well.  We are very thankful for that.  We were asked to have Jackson be a part of a study about Leukemia.  Doctors are trying to figure out why Down Syndrome babies recover better than other children.  The doctors will use some of his bone marrow and spinal fluid to use for research...very cool!

Jackson's Journey Video

May 5, 2011

Jackson is 7 months old today and becoming a ladies man!...:-)  He has so many ladies looking after him.  Today Jackson was taken off of Zofran (nausea medication) and IV fluids.  He has been eating very well today.  He looks really pale to me (I know he is already pale)  and I don't think he feels very well.  He is really mellow and tired.  His counts are down today farther then they were yesterday, which was to be expected.  He might have to have a blood transfusion or a platelet transfusion in the next day or two.

May 4, 2011

The news that Jackson has Leukemia was not a shocker to Erik and I, they had been closely monitoring Jackson's blood since he was born.  Jackson was at high risk for Leukemia due to his Down Syndrome.  He had a 30% chance of developing it.  The doctors are very positive none the less.  Apparently Down Syndrome children have a higher % of recovering completely than other children. (80% compared 50%).  We were told that Jackson would have to undergo 6 rounds of chemo.  Each Chemo would last somewhere from 4-9 days and then he would have to remain in the hospital for a couple of weeks after until his blood counts come back up.  We were admitted to Childrens of Egleston on Sunday April 24th.  On April 26th Jackson was given a central line, a bone marrow test, and spinal tap.  When they did the spinal tap they gave him his first dose of Chemo.  He then started continuous chemo through his Central line on April 27th.  Jackson successfully completed his first round of chemo on Sunday, May 1.  We are now playing the waiting game.  Every morning they take some of Jackson's blood and run his counts.  Thankfully they put in the central line so I don't have to see him cry in pain every time he is stuck.  His blood counts have to be up and stay up for so many consecutive days before he can come home.  We were told 2-3 weeks.  It is amazing how well Jackson has done so far.  He is still the happy smiling baby we have grown to love.  He makes us so proud!  Since we have been here the past week and a half, Jackson has learned to hold his bottle while he eats.  :-)  Erik and I are blessed to have a church family who cares so much about us.  This week while we had to go to work, people from our church volunteered to come and sit and hold Jackson at the hospital.  What a relief to our hearts that Jackson wasn't alone.  Jackson now weighs 13.1 pounds and he is still eating!!! Praise the Lord!

The begining until now

Jackson Scott Lundquist was born on October 5th, 2010 in Athens, Ga. He spent his first week in the NICU and went home the 8th day. He then was admitted to Childrens Hospital of Atlanta Egleston for Heart Failure which was expected due to his Down Syndrome. After 8 more days of getting the heart failure under control he went home and enjoyed his time at home for 4 months. He then was admitted to Childrens for open heart surgery on February 1st, 2011. After a successful fix of his heart he went home again 4 days later. He recovered well for the next few weeks.  Jackson was unfortunately readmitted to Childrens again on April 24th, 2011 due to his diagnosis of Acute Myeloid Leukemia.  This is where this story continues...