I not go potty!

We have been working on attempting to get started on potty training Tinsley.  I say "attempting to get started" because she hasn't been too excited about it.  We have a princess potty that cheers after you go and she uses it in the mornings and seems excited, and occasionally we have luck getting her to use the potty during the day.  It has kind of turned into a battle of wills which I know isn't a good thing.  Tonight she was reading her "Potty" book and she kept saying "I not go potty".  She told Toby the other day "I like to wear a diaper".  I have decided not to stress over it.  We are working on it and I think the more I push it, the more headstrong she will become, so I am trying to make it fun(as fun as potty training can be) for her.

Trip to the ER

Ace came down with a nasty virus last Friday the 21st.  On Wednesday, he had a rash on the back of his neck.  We were concerned that it might be the LCH attempting to pop back up, so we made an appointment with the dermatologist for Friday to have him check Ace to see if a trip to Dr. McClain was warranted.  On Thursday evening Ace started running a low grade temp.  It stayed at low grade while treating with advil and tylenol alternately.  We saw Dr. Anderson on Friday morning and he said that he felt the rash was just a "heat type" rash of some sort.  We were thrilled.  We then went to his appointment with Dr. Boecker.  When we got to the appointment, the nurse checked Ace's temperature and it was 99.5.  Ace was pretty fussy and you could tell he didn't feel well at all.  I honestly was attributing the fever to teething or possibly an ear infection.  We waited about 30 minutes to see Dr. Boecker and Ace just got fussier and fussier and started feeling really warm.  I went out of the room and asked the nurse to come in and recheck his temperature and it had gone up to 102.6 in just the 30 minutes we had been there.  Dr. Boecker came in and checked Ace's ears and throat and said he had no signs of any type of infection.  She was concerned he might have a virus.  Hand, foot and mouth and roseolla have been going around(not great).  We headed to San Antonio for labs. Ace's temp continued to rise and he was getting fussier and fussier and started spitting up crud by the time we got to San Antonio.  I spoke with Dr. McClain's assistant on the way to SA and she said if he seemed like he was getting worse to take him to the ER.  We waited a few minutes at the lab and he continued to get worse, so we went to the ER.  They immediately put in an IV and started giving Ace fluid.  They did labs which all came back good.  They had to finally give him a suppository in order to keep any tylenol in him.  The ER doctor agreed that it was likely some sort of virus Ace had.  Fortunately, his white blood cell count was at 8.02(the highest it has been since he started chemo) otherwise the ER doctor said she would have admitted him.  We went home and continued the advil/tylenol every 3 hours.  We had a hard time controlling the fever.  Saturday night it got up to 103.9.  Ace was miserable!  We called and talked to the oncology doctor on call in Houston and they said to continue giving him fluids, cool baths, and alternating the tylenol/advil.  We were also using a cool, damp rag while he slept in an effort to cool him off.  It was not fun, we would literally put the rag against him and it would be hot almost immediately from touching him.  It was so sad, this was the first time he has been so unhappy and felt so crummy.  Through all the treatment and crud he has endured, I think that the past few days have honestly been the hardest on him.  On Monday, the fever finally started creeping back down.  He was officially fever free Tuesday.  Yay!  He seems to be feeling good again today. We couldn't be more thankful!

Unhappy camper at the ER  :-(

One of the few things that did make Ace happy over the past few days was Toby reading "Little Blue Truck" to him.  It is pretty cute.  He loves it when Toby reads it.  I don't get near this reaction.  Dad is apparently much better at truck and animal sounds than me.  :-)

Why my glass doors will NEVER be clean(and I'm completely okay with it)

Even when you are only wearing a diaper it is important for a girl to wear her pink bracelet and necklace.

Storytime with Tinsley

It's hard to make out much of what she is saying, but one of her quotes is "Mommy is a girl".  We have been working on identifying the difference between girls and boys.  She finally started saying "Mommy is a girl".  For the longest time she would say, "No, you are not a girl, you are Mommy!"

Father's Day with Dad

We celebrated Father's Day a little late this year.  Toby got home from Lubbock the evening of Father's day, but the kids were already pretty tired.  We waited for him to open his gift until they were rested and not fussy.  He had lots of help opening his goodies.  

Tinsley was pretty disappointed that there was no cake after Toby finished opening his gifts.  She said "Hey, where's the cake?"  This little girl is all about celebrating!

New Goggles

Mom Mom got Tinsley new goggles.  They are a hit!  She had to immediately try them out in the big bathtub.

Great Checkup!

Ace had a great checkup today with Dr. McClain.  He doesn't have to go back for a month.  The rash looks the best it has looked to date.  There are still a few spots on his bottom(very few), but they appear to have completely cleared everywhere else on his body.  Yay for a great checkup and yay for no labs for a month!  We normally try to set Ace's appointments for around lunchtime so that we can leave the house in the morning, go to the appointment and then drive back home.  It makes for a really long day, but is so much easier than packing up and having to stay in Houston overnight.  

We upgraded Ace to his "big boy" carseat.  

Daddy is out of town for work, so Mom Mom was our chauffer today.

Ace did not get to help drive- we normally stop outside of Houston to change Ace's diaper and give him a break from his carseat.  As you can see he was happy to be out of the carseat.

The clinic was packed today. We had quite a wait.  

Ace took a nap to pass the time.

After Ace's appointment, we sent pics to dad to tell him how awesome the appointment went.

 

It was a LONG trip home.  Ace was done with being in the car and the carseat by the time we were about halfway home.  We made several stops, but this was how most of the last leg of our trip went.  :-(

 

Happy to be home and out of the car

Even happier to be reunited with big sister!!!

Tinsley had a great day with DD, but was so happy to see her brother.

Thank you all for your continued prayers for our sweet Ace

Playdate with Blake and Max

Tinsley and Ace had a play date with Blake and Max today.  They had so much fun.  It is crazy to see how quickly they are all growing!  Of course we attempted to get a picture of all of them together.  There is not really one where everyone is smiling or looking at us, but the pics did turn out pretty funny.

We have no clue what they were looking at, but it must have been interesting.

8 months old

Ace, you are 8 months old!  Time is really flying by.  You are SO MUCH FUN!  You have the happiest, most easygoing personality.  You are a trooper and go with the flow no matter what comes up.  A little bit about you at 8 months old:

• You are wearing size 12 month sleepers and 9 month or 12 month onesies.  We are about to have to switch to 18 month sleepers and you will only be able to wear 12 month onesies.  You are long!
• You have 2 teeth.  Those bottom 2 teeth make your smile so cute.  I am expecting a new tooth or two to pop through any day now.  You are drooling and chewing on EVERYTHING.
• You are so, so happy!  You smile and laugh constantly.  When you smile or laugh, your whole face lights up.  The only time you seem to be even the least bit fussy is if you are not feeling well.
• Nights are still pretty rough.  We give your chemo in the evening before bed.  It is so hard to give it to you because we know it makes you feel crummy.  We literally notice a change in your demeanor within a few minutes of giving you the medicine.  Dr. McClain has told us that the chemotherapy drug you are on is notorious for causing stomach cramping.  You are such a trooper, you take the medicine without any trouble and roll with the punches throughout the night.
• You normally go to sleep between 9-10.  We have to space your last bottle with the medicine appropriately, so the time is different each night.  You will normally sleep for a few hours and then wake up around midnight.  At this point, you normally take a little bit of a bottle and will go back to sleep pretty quickly most nights.  You then wake up pretty much every 2 hours or so throughout the night and are pretty much awake for the day around 6.  I like to joke that you are a little guy that never misses a sunrise.  We normally spend quite a bit of time with you in the rocking chair at night.  You also like to sleep in bed with us.  It is hard because you seem so tired, but so uncomfortable.  I think that if you could just get comfortable you would sleep so much better.  We know this won't last forever and will do whatever it takes to keep you as comfortable as possible and get you through this.
• You are a good napper.  I think you would be an even better napper if your sister wasn't around to wake you up so much.  You normally take a morning nap anywhere between an hour to an hour and a half long.  You also take an afternoon nap most days.  You really need your rest during the day since nights are so rough.  I think Tinsley really misses your company when you are asleep because she will quite often walk over to where you are and get right in your face and say "Ace, did you wake up?"  Um, yes Tinsley, he sure did(now that you woke him up). ;-)
• You "sing" yourself to sleep quite often.  It is the sweetest sound ever. I am going to record it and will post it soon.  When you get tired and are about to go to sleep you will start humming to yourself.  You don't do it all the time if we are rocking you, but you always do it if we are in the car and you are in your carseat or if you are in your swing.  It is so sweet to hear you in the backseat when we are going somewhere.
• You LOVE being outside.  If you can't be outside, you like to have your walker or exersaucer close to the door or window so you can see what is going on outside.
• You are an AWESOME eater!  You literally want to try everything we are eating.  You are pretty good with baby food- your favorite baby foods are oatmeal with mixed fruits, apples and bananas with rice cereal, and carrots.  You also like puffs and yogurt melts.  But, you would really prefer it if we would toss the baby foods and feed you table foods mashed up.  Your favorites are ham and macaroni and cheese. You also have been known to share my muffin with me in the mornings.
• You are crawling everywhere!  You have also started pulling up onto stuff already.  You push up on your feet and hands as well.  You are SO STRONG!  You will be walking in no time.
• Your favorite person in the world is still your big sister.  You absolutely adore her.  She can just walk by and you start laughing and attempting to jump out of our arms to get to her.  She loves you too and is so good with you.  Seeing the two of you together makes me so happy.
• You love Eagan.  You have started paying a lot more attention to him lately.  You seem especially interested in his fluffy tail and ears.  I think you are going to be an animal lover like your big sister

Tinsley "the smile maker"

Tinsley loves chair picture day for Ace and always asks for her "big sister" sticker.

Tickle, tickle, tickle

Tinsley decided Clifford needed to wear the "big sister" sticker

Tinsley at 8 months old:

http://tobyandkristitalley.blogspot.com/2011/08/8-months.html

Update on Ace

I have not updated on Ace in a while.  He has been doing really well.  He had a rough patch a few weeks ago, but is doing good again.  We had been so excited by Ace's progress.  The rash had pretty much completely gone away and our main concern was keeping him healthy due to his counts being low.  Unfortunately, on the 26th of last month he came down with a virus.  He tested positive for parainfluenza which is the viral strain that is responsible for RSV and pneumonia.  He had a chest x-ray and that was clear, so we treated with breathing treatments, tylenol and bendadryl in order to try and dry up his congestion.  We were not sure if it was the virus, or what triggered it, but Ace's rash popped back up in the diaper area as well.  We were bummed.  Ace saw Dr. McClain on May 6th and we were really disappointed after his appointment.  Dr. McClain expressed concern that the disease might be outsmarting the medicine.  He upped the chemo dosage and told us that if the rash was not better in 2 weeks, Ace would have to have a port put in and they would begin the vinblastine chemo protocol to treat him.  It was a crummy day.  We knew going to the appointment that the rash was back, but it is terribly disappointing to hear your child's doctor say that he thinks the medicine might not be working.  Of course we know there are other treatment options, but we really want the LCH to respond at the lowest level of medication possible.  I just have to say again how thankful we are for Dr. McClain.  He mentioned that he would be traveling the next 2 weeks quite a bit at our appointment on the 6th.  He went to Greece and to Washington DC to speak about Histiocytosis diseases.  I was surprised last week when he called me to check on Ace.  I was able to give him a good report.  The rash seemed to begin responding to the stronger treatment.  Dr. McClain was thrilled.  You can tell that he genuinely loves what he does and cares deeply for his patients. Dr. McClain said  "Ace is such a happy little boy and a joy to treat.  I was terribly disappointed when the rash recurred."  He said that the skin form of LCH is the most frustrating form to treat because all patients react so differently to treatment.  Fast forward to today- the rash is pretty much cleared up again.  Ace had a really good appointment.  Dr. McClain is thrilled with the results.  Our only major concern is that his counts are pretty low(lower than they have ever been which is to be expected since the chemo dosage he is on is higher than it has ever been).  So, we have to be extremely careful in an effort to keep him from getting sick.  Ace will have to have labs next week and likely the next in order to keep an eye on all of his counts.  He goes back to see Dr. McClain on June 10th.  We are thrilled about today's appointment.  He had been having such good appointments until the one on May 6th.  Toby had said after one of our really good checkups in April, "man it feels so good to come and get such good news, it will be really crummy if we come and he has a bad appointment."  He was right, the appointment on the 6th felt like a punch in the gut.  Today was so much better.  We wish that his counts were not low right now, but we are so thankful that the disease does still seem to be responding to the medicine.  Thank you all for praying for Ace and our family.  We are so thankful to have such a strong support system.

Headed to Houston for a good checkup

Ace is growing!  He weighs 21 lbs 

Thanks for checking in on us!  

Bathtime Fun

Tinsley and Ace love to take a bath.  Ace REALLY loves to take a bath with his big sister.  If I put her in the tub, he is immediately trying to jump in.  I think he might be part fish!  He puts his face in and laughs so hard. When the water is running, he jabbers and jabbers and tries to reach for it.  It is really cute.

Ace thinks he is already too big for his seat. Tinsley climbed into it and told me "I'm a baby"