February 26, 2013


Tinsley attempted to share a Nerd with her brother today.  Mom sent me these pictures.  She said that Tinsley was enjoying some of the candy and the next thing she knew, she heard her asking Ace if he wanted some candy.  We love that she wants to share, but we are going to have to really watch her.  She is FAST!!!!!

"Who, me? I am TOTALLY innocent"

"If only Mom Mom weren't such a party pooper, 
I would be washing down a delicious Nerd.  
I am big enough now that I even hold my bottle by myself!"

February 25, 2013

Fun with cousins

Drew, Mady and Calley came over last night(they brought their parents and Nana and Paw Paw too).  We had a shrimp boil for the adults and pizza for the kids.  Tinsley had a blast playing with her cousins.

Today is Uncle Trey's birthday.  
We are all about any excuse for cake!

P.S.  Ace was here too, he was just too busy getting loved on by Nana and his aunts to pose for any pictures. :-)

February 23, 2013

Save Water!

Tinsley and Ace are all about water conservation!  Ace LOVES to take a bath with Tinsley.  Actually, Ace loves doing anything that involves Tinsley.  She walks by and he literally laughs out loud.  He adores her.


February 21, 2013


Ace is doing really well taking his chemotherapy.  We have been thrilled by how well he is doing.  He is normally not too good about taking medicine, but he has done great!  We give it to him at night normally between 8 and 8:30.  He has to take it on an empty stomach, so we give it to him based upon the time that he finished his last bottle.  We then wait a few minutes and give him phenegren, then we wait a little longer(until it has been 30 minutes since the chemo) and we give him his night time bottle.  The first night was REALLY rough.  We did not give him the phenegren.  The doctor had said that he might not need it and to give it as needed only.  Big mistake not giving it to him.  He was miserable until the next night around 6:30- just in time to get ready to give it to him again.  The second night we gave him the phenegren and he did better.  He has been spitting up quite a bit more since starting the medicine, which is to be expected and has been dealing with some diarrhea, which is unfortunately also to be expected.  He is not sleeping too great, but he wasn't a great sleeper before he started on the medicine.  Some nights are better than others.  Honestly, he is pretty much our happy, easy-going little trooper.  What normally messes things up is that right about the time he goes to sleep, he goes to the bathroom.  Because the area that is of most concern right now with the rash is his bottom, we change him immediately after he goes to the bathroom, day or night.  Last night he went 4 times, 2 of those times were right after he had gone back to sleep.  :-(  Poor baby!  All in all, he is doing great.  We really think that the spots on his back, neck and head look better.  I don't think that the area on his bottom is really any better yet, but I don't think it is worse either.  The fact that the other areas look better makes me feel really positive and I hope we will see a noticeable difference on the area on his bottom soon.

Tinsley woke up on Monday morning around 3 a.m. with fever.  She was fine Sunday night when we put her to bed and woke up twice during the night before she woke up at 3 and was not running fever.  How can a kid go to sleep fine and wake up with a fever close to 103 just a few hours later?  We thought it was likely a virus which is what the past few visits to the doctor had resulted in.  We gave her Advil at 3 and tylenol at 6. The fever was still at 102 and she felt crummy, so we went to see Dr. Boecker.  We are so glad we took her.  She has tonsillitis.  They gave her an antibiotic shot of rocephin and put her on a strong dosage of amoxicillin.  Her fever finally broke yesterday, so as of today, we can have her and Ace together again.  Dr. Boecker said to keep them separated until she was fever free for 24 hours.  We can't be too careful and have to make sure we take all steps to keep Ace from getting sick.  

We are thrilled that Ace is doing so well with his medicine and that Tinsley is back to feeling good again.  Please continue to keep Ace in your prayers.  Our hope is that the 6MP will work and he won't have to have a port put in for chemo.  While we know this would not be the end of the world, we would just like to not have to put him through it if at all possible.  Thanks for checking in on us!

Ace has been rolling around everywhere these days!  He can roll from his back to his tummy and his tummy to his back easily. He will also spin around in a complete circle on his back.  He will be mobile in no time!

This picture cracks me up.  Mom sent it to me the other day when Ace and Tinsley were at her house.  Tinsley loves watching any movie with animals.  She has a movie that she calls "rodeo".  Obviously, there is a rodeo in it.  She sits and claps and cheers during the movie.  They both seemed to be enjoying the "rodeo" when mom took this.

This picture is not very clear, I took it with my i-phone in the dark with the flash off.  But I think Ace and Toby look so sweet.  He seems to sleep longer periods if we hold him, so that is what we have been doing the majority of the time at night.  He has gotten better over the past few days about sleeping in his swing.  He still wakes up pretty much immediately if we attempt to lay him down.

I wish I could have understood this conversation. 

"No cheese mom" was the response I got when she realized 
I was taking their picture.

We bought Ace a new swing this week.  Our current swing creaks pretty loud when we turn it on.  It has been used A LOT.  We went through 2 swings with Tinsley as well.  The other issue we had with it is the fact that it sounds like a machine gun going off when you turn the mobile on.  I can't imagine why- ha!  Tinsley is constantly pulling on the toys on the mobile saying "You want your toy Ace".   I catch her sitting in Ace's stuff all the time.  Here she is in his rocker.  Yesterday I walked through the living room and she was sitting in his swing watching tv.  I guess I should just be glad she doesn't attempt to get in them when he is sitting in them.

 While I was getting breakfast together yesterday for Tinsley, she put her Dora's in the extra chairs at the bar and climbed up on a chair with Clifford.  She loves her dolls.  She will talk to them as if they are real.  She constantly says "Hi Dora" or "Come on Dora"

 I promise Tinsley has a closet FULL of clothes.  Her fever has been so high this week that we haven't really been fighting the keep your clothes and socks on battle.  She is normally pretty good about clothes, but does hate to wear socks and shoes.  It seems like pretty much every picture I have from this week, she is wearing her diaper and her Cinderella high heels.  Oh well, whatever works :-)

Mom took this video of Ace.  She is apparently VERY funny:-)

February 15, 2013

Ace's treatment plan

Ace's appointment went great today.  The head CT and abdominal ultrasound results were all clear.  Ace has skin only LCH and we could not be more thankful.  Dr. McClain feels that Ace's rash on his back, bottom, and under his arms is not getting any better and wants to begin treating him with an oral form of chemotherapy called 6-MP(Mercaptopurine).  He will take it once daily at night for the next few weeks.  He is also taking an antibiotic to prevent infection or pneumonia.  Dr. McClain said that he has around a 50% success rate treating skin only LCH with the oral chemotherapy.  We go back for a follow up appointment on March 4th.  If the rash is not responding to the oral chemotherapy, then Ace will have a port put in for infusion chemotherapy.  If it is responding, Ace will continue on the oral form for a year.  All in all, we are thrilled.  We are so thankful that the skin is the only organ the LCH is affecting and are extremely hopeful that the oral form of chemotherapy will work.  Please keep Ace in your prayers.  We are hopeful that the side effects of the medicine will be minimal and that the oral form will work.  

Ready for the day!

Today's appointment was a pretty long one.  They had to do two separate draws to get blood for lab work. Ace was not a happy camper.  We are headed home now and he is sleeping.  We are so glad to have the past two days behind us and we are so thankful for good test results.

February 14, 2013

CT and Ultrasound

Ace had his abdominal ultrasound and head CT this morning.  He did so good!!!!  It actually could not have gone better.  He could not have any milk after 6 a.m. and was able to have water or apple juice from 6-8 a.m.  He polished off his bottle at around 5:45 this morning and went back to sleep around 6:30.  He woke up around 7:45 and had some water.  We were supposed to arrive at the hospital for his tests at 9:30 and we are staying about 5 minutes from the hospital.  Around 8:15, he started to get antsy so we decided to go ahead and load him up and head that way around 8:30 hoping he would go back to sleep in the car.  No such luck, he got the hiccups as soon as we got in the car, so we thought we might be in trouble.  But, as usual, Ace was a trooper and did great.  We got to the radiology department a little before 9 and they took us back almost immediately and did the ultrasound.  Ace laid pretty still and just kept reaching for the ultrasound tech's wand.  Normally they will not tell you anything during the procedures, but there was a doctor in the room observing today and he told us that nothing stood out on the ultrasound to him.  This is wonderful news!  The kidneys, liver and spleen are harder areas to treat for LCH patients.  The radiologist and Dr. McClain still have to review the images, but we are glad that there was nothing of major concern for the doctor that was there.  We then went back to the waiting area and only had to wait about 10 minutes before they took us back for the CT.  The CT is the test that we were dreading as we felt pretty sure Ace would have to be sedated in order for him to be still enough for them to complete it.  They put the IV in for the contrast and sedation if needed as soon as we went back into the prep area.  The CT was not actually scheduled until 11:30, but this was at 10:15.  They said that they wanted us to have plenty of time to try to get Ace relaxed after they put the IV in hoping that they would not have to sedate him.  Ace was getting hungry by this point, but was also very sleepy.  I walked and bounced and tried all my tricks to no avail to get him to sleep.  Toby took a turn to try and wouldn't you know it, he was out like a light within a few minutes.  They took us into the CT room immediately, got him all set up and did the test.  Ace slept all the way through it and never stirred until they took the IV out.  We couldn't be more thankful!  We are so glad he did not have to have any type of anesthesia.  We have our follow up appointment with Dr. McClain tomorrow to receive the results of the ultrasound and CT as well as the treatment plan for Ace.  

Thank you all so much for your prayers for Ace.  He is doing so good!  We feel so positive about today's tests and are so glad they are behind him.

Loaded up and on our way

"Dad, it makes me SO SLEEPY when you rub my head like that"

All done!

Relaxing with dad

Happy Valentine's Day!

Tinsley and Ace

Photos taken by Heirloom Portraits