July 30, 2011

Yesterday was one of those days where I want someone to pinch me to see if I am dreaming.  The doctor came in yesterday afternoon and said, "Happy day!  You can go home!"  What????  He has never come home that fast before.  It has always been 3-4 weeks and it has only been 2...I couldn't believe it.  So we quickly made phone calls and some willing friends helped us get all of Jackson's stuff home.  Usually he has to have platelets or blood but this time he didn't.  I am so happy to be home!!!  We were praying for some encouragement and the Lord blessed us with some.  Today I got to feed him sweet potatoes in his highchair at HOME! Happy Day!!!

July 29, 2011

Jackson is doing well...his counts are still very low, but he is feeling much better.  He is enjoying playing, rolling, sitting, laughing, and just being his happy self.  We have been working on getting him to eat solid foods as well as formula.  The last couple of days he has been doing pretty well opening his mouth and eating.  He is still really messy, but he gets some of it into his belly. :-)  This week his new food is bananas and he seems to really like them.  In a couple of days we will try green beans.  I can't get him to eat the rice cereal.  He hates it, even when it is mixed in with baby food.  I can't believe I already have to go back to work next week.  I am going to miss spending so much time with Jackson.  Please pray for Erik and I as we start driving separately to the hospital every day after work.  It gets very old very quick.  Thanks for you prayers!

Sweet boy!

At the hospital we put blankets over the sides of the crib so that it is darker and he will go to sleep without getting distracted.  Today he figured out how to pull them down and look out anyway!! Silly sweet boy! Peek-a-boo!

July 26, 2011

Jackson's counts continue to drop...hopefully that means that this time next week they will be on there way back up.  :-)  We are so thankful for friends, church, and family who are there to help us in our time of need.  We have found people to watch Jackson that first week I have to be back at school.  Thank you Lord!  Sometimes I feel like when we feel the lowest, God sends special people into our lives to encourage us.  Thank you Lord for friends!

July 25, 2011

"Fear not for I am with thee; Be not dismayed for I am thy God.  I will strengthen thee yea I will help thee yea I will uphold thee with the right hand of my righteousness" Isaiah 42:10

July 24, 2011

Yeah we finally got moved into a bigger room at the hospital last night!!!!  Much more room for Jackson to play!  We brought in his excersaucer from home and he is really enjoying it today.  Eating is still a big concern for us....he eats, just not enough.  Please pray!  We are also asking prayer that we would work out who can watch Jackson when I have to return to work August 1st.  We have a nanny but she can't start until August 8th.  I don't want him to be alone here, but I can't take off the first week of school.  Thank you all for your continued prayers and encouragement to Erik and I.

July 23, 2011

Good morning!  I just wanted to share a funny story about Jackson! :-)  Yesterday after a miserable day I decided to give Jackson a bath.  Giving him a bath at the hospital is different than at home.  You have to do it on the hospital bed.  They give you this bowl about 12 inches in diameter and about 5 inches deep.  Not big enough for a baby to sit in.  So I just lay him on the bed next to the bowl.  I spread towels over the bed and filled the bowl with warm water about 3 inches full.  I washed Jackson's hair and then he decided that he wanted to be in the water I guess. He reached over and grabbed the tub with one hand and pulled it over himself and dumped the whole tub of water on top of him at once.  So he is laying there in a huge a puddle of water looking at me like, "what just happened??!!"  Our poor nurse had to change his bedding for the third time that day.  It just really made me laugh...I wish I had thought to take a picture! :-)

July 22, 2011 Part 2

Please pray for Jackson...he was doing really well this morning with eating and then after his second feeding you could tell he didn't feel good.  He then proceeded to throw up several times and you could tell he just didn't feel good.  They give him medicine and it seems to be helping for now.  The doctor says that he might have sores in his throat from the chemo, so they might be giving him pain meds for that.  It is so hard to see my baby feeling awful.  His counts are starting to drop, so now we just wait.

July 22, 2011

Jackson is doing well today.  He went off of his IV fluids yesterday.  So he can at least move away from the crib now.  We are working on getting him to eat more still.  His eating feels like a constant battle.  No fevers since the chemo stopped. :-)  We are still waiting for a bigger room.  He is very playful today and happy! 

July 19, 2011

Jackson is on his last few hours of chemo today for round 3.  This round seemed to make him more sick to his stomach than the others.  Last evening he actually threw up (which was a first from chemo) They are giving him stuff to help make him feel better.  He hasn't had issues with fever in the last 24 hours, which is a blessing.  One of the chemo drugs Jackson gets is oral.  The first round I noticed that the oral chemo was a purplely color and smelled like grape and he would take it with little problem.  This time it was clear and he did not want it.  They decided yesterday that they would have to put in an ng tube(a tube that goes through the nose into his belly, he had one to eat with before his heart surgery) to get all the medicine in him.  I asked the doctor why the medicine was a different color and he said"it's a different color?"  I explained and he said "hmmmm...this medicine isn't flavored.  Let's try flavoring it before we try an ng tube."  So they did and he sucked it right down.  :-)  I don't understand why it wasn't flavored in the first place.  Thank goodness he didn't have to have a tube right now.  Please pray that his appetite will pick up especially after chemo is over.

July 17, 2011

Jackson is feeling better today!  He had a temp of 100.8 this morning, but now it has gone away(for now at least).  He was the happiest he has been in the last couple of days today.  Thank you for your prayers, we really appreciate them.  We also had a prayer request answered and that is that we have found a nanny for Jackson when I return to school!!! Praise the Lord!

July 16, 2011 Part 2

Please pray for Jackson his temperature got up to 104 degrees.  They have him on some meds and they seem to be helping.  I freaked out when I saw the temperature.  The doctor says it is normal for this kind of chemo. He is well drugged and sleeping.  Hopefully tomorrow he will feel better. 

July 16, 2011

Jackson did well yesterday.  They replaced his central line and did his spinal tap/chemo.  He was starving after they finally finished.  15 hours without eating is rough on a baby.  He ate 8 oz of pedialite and then ate 7 oz of formula 3 hours later.  They put us in a really small room until a big one becomes available.  Jackson is having a rough day today.  He spiked a fever due to the chemo and is so grumpy.  Please pray that he feels better soon.  The nurses made him a special hat to wear because chemo patients generally lose their hair (even though he still has his mohawk :-)  So here is a picture of him wearing it after surgery yesterday. 

July 14, 2011

Tomorrow we go back to the hospital for round 3.  The time at home with Jackson has been priceless.  You don't realize how important the little things are like being at home in the evening with your family or putting your baby to bed in his own crib until you don't have that anymore.  We report to the hospital at 6:15 tomorrow morning.  They will take blood and check counts.  They are assuming his counts will be good.  Unfortunately his central line does not work at all anymore, so they are going to replace it tomorrow.  They will also do a spinal tap while he is asleep and give him the first dose of chemo in his spine.  If all goes well they will start the continuous chemo tomorrow afternoon.  It feels like it has been forever with Jackson in the hospital but I know that it could be worse.  We are trying our best to have a good attitude and make the best of all situations.  When my  mom was here last week, we spent some time singing around the piano and we found this song that really encouraged us:

I trust in God wherever I may be
Upon the land or on the rolling sea
For come what may from day to day
My Heavenly Father watches over me
I trust in God I know He cares for me
On mountain bleak or on the stormy sea
Though billows roll
He keeps my soul
My Heavenly Father watches over me
He makes the rose an object of His care
He guides the eagle through the pathless air
And surely He remembers me
My Heavenly Father watches over me
I trust in God I know He cares for me
On mountain bleak or on the stormy sea
Though billows roll He keeps my soul
My Heavenly Father watches over me

July 1, 2011

We had our clinic appointment today.  They tried to get the line to work, but couldn't.  They got a small amount of TPA (a medicine that breaks up clots or blockage in the line) into the line, but still couldn't get it to flush.  Since he still has one working line, the doctor told us that it can wait until next chemo round, and that they might just use the one that is working and not replace the central line at all.  :-)  The doctor also told us that we get to spend an extra week at home.  Yeah!!!  So, his next appointment is July 15th.  We will see what his counts are then and they will probably admit him for round 3.  Thank you for praying, even though they couldn't get it to work the end result was a positive for us.  

June 30, 2011

Ok...so yesterday was not fun...We were told by the doctor to flush his central lines every other day while he is home.  So, last night we got everything out and the first line flushed great...the second line would not flush no matter what we did...so the doctor had told us if we have that problem to call the hospital immediately.  When I called I spoke to the Hematology doctor on call and explained to him what was going on.  I then asked him if it could wait until Friday at his clinic appointment. (Jackson is not on meds through his central line, so it wasn't an emergency.) He said no you have to come to the ER right away.  We arrived at the ER at 8 pm last night.  We waited in a room as nurse after nurse after doctor came in spoke a few words and left.  Finally at 2 am the nurse came in and said, "the doctor says this can wait until Friday's clinic appointment...WHAT?!?!?!?!  Didn't I just ask him that a few hours ago?  AHHH...so we arrived home at 3 am.  Poor Erik had to go to work on 2 hours of sleep.  So, tomorrow we go to our clinic appointment to try and get the central line to work.  If they can't get it to work they will have to replace it again. We really don't want that again.  Please pray that they will get it to work tomorrow. 

June 27, 2011

YEAH!!!! Doctor's gave Jackson the all clear to come home!!!! We are currently awaiting discharge orders and then Jackson is out of here!!! (at least until his next round)  We have to return on Friday for a clinic appointment, just to make sure that his blood counts are still coming up the way they should.  I am so excited to be able to spend some time at home with my precious little boy and with my mom.  It looks like it is going to be a great week! :-)  Thank you Lord, especially for the little things!

June 26, 2011

Jackson is doing well today.  His counts have come up some.  The doctor told us today that they took him off of antibiotics and are hoping that he will be able to come home tomorrow.  We are trying not to get our hopes up but are praying that it will work out.  The walls of the hospital are starting to close in on us! :-)  Jackson is very excited that his grandma Craven gets to come visit in 3 days!!!

June 22, 2011

Jackson is doing well today.  He is full of energy today and playing like he is making up for lost time. :-)  His counts are still low but are starting to go up slowly.  The doctor said today that it will probably be another week here...he could come home sooner if his counts really start to pick up.  Praying for a speedy blood count recovery.  His onesie fits his mood today...Tigger...bouncy bouncy...:-)

June 21, 2011

Jackson was on two antibiotics through the night (His fever went up to 102 in the middle of the night).  He will continue to be on antibiotics for the next couple of days. They seem to be helping because he is a different baby today.   He is still a little mellow but at least he isn't crying or fussy like yesterday.  I realized yesterday how spoiled I am with a happy baby.  I don't know what I would do if my baby cried all the time.  The doctor said his counts are status quo, not much difference.  The cultures they took yesterday are not growing anything yet, so they don't think it is an infection...just a result of low blood counts.  I am so thankful for medicines that make my baby feel better.  We really appreciate everyone's prayers. Thank you!