Birthday for Sister, Colds, ,Apple Festival,Chili Cookouts and running like crazy

Hi everyone,

I know it's been a while. All of a sudden Ava's birthday party was here and we have been running ever since. Ava and Cole's Aunt Jeannie and Uncle Will flew in from the West Coast to be here to celebrate.

We have weathered two colds with Cole now and he has done really well both times. We are waiting for the Dr. to call us to have us come in for RSV shots again this year just to be on the safe side. They said Cole is probably strong enough to handle it this time around but they felt more comfortable doing it again this RSV season and we were for it too.
We have all had our flu shots and Cole is waiting on that too. Since he had an egg white allergy show up at the allergy testing they want to watch him for a little bit after. They feel it more important for him to get his flu shot than get the flu and we agree with that too. We'll give him some Benadryl before to help with anything that might try to give us problems.

This past weekend we went to the Apple Festival out in York/Clover, SC. It was a fun time as a family. We came home and that evening went back out to a chili cookout and music in the neighborhood. It was very cold, but still a good time.




A note for those of you who know the nightmare of Eczema and more specifically Cole's battle with it and people who have been praying for Cole's eczema, we have had some kind of breakthrough. God has answered some prayers because some things we changed for Cole again have seemed to help with his eczema...........dramatically. It's not gone, but it's night and day difference for us and Cole! We actually made it a whole week without having to use any steroids which has been impossible before this to go longer than 3 days without a head to toe breakout. When the doctors gave up on us and our dermatologist was careless with her information or non-information we tried somebody who does natural medicine. When you are left with nowhere else to turn and you watch your child suffering 24 hours a day you will do anything and try anything to help them.
Some of the items didn't hurt but just weren't strong enough to battle the eczema. Some of the items we are still using seem to be making a huge difference! We are still putting a drop of flaxseed oil in one of his bottles a day, and we changed our deteregent for a 4th time. I can't tell you if it's all of the above or what, but we are going with it because it has given all of sleep again. We are going on 2 1/2 weeks now and have only had to do spot treatments here and there.
We still have an appt. at Duke on November 4th since it was so hard to get in. It can't hurt to go.

We hope you enjoy the recent pictures and God Bless,

Laura

Note to Self

The oatmeal bath turned into a bad experiment. Cole looked like one big red blister tonight and what was almost cleared up returned even angrier. Oh well, now we know, oatmeal baths are off limits for Cole's case. We even bought distilled water to make the oatmeal paste with to be safe.

2 1/2 Months Later

We went back to see Dr. Bensky this week for a check up on him. This was our first time back since his post-op visit. We were even going back with Cole's first real cold. We were curious what his oxygen levels would be with a bad cold, but at the same time something we were glad we didn't know everyday that he has had this cold.

Anyways, Cole was weighed and measured. He came in at 20 lbs. and 28 1/2 inches. We don't call him Tubbs McGee for nothing:)

His oxygen came in in the mid 80's which is great for Cole.

He was able to come of his lasix also, so one less medication for him to have to take.

After Sean our male nurse took all the measurements and readings Dr. Bensky came in and he just started laughing when he saw Cole. He just laughs at how big Cole is in general but especially for a heart baby. Dr. Bensky almost seems like he wants to line up some pediatricians everytime he sees Cole to challenge them to see if they could tell him that Cole is a heart baby without seeing his chest where the incision is.

Cole and Dr. Bensky have a special bond that has grown and it's a good feeling as parents to witness this, since Dr. Bensky is such a big part and has been such a big part of our lives since I was 5 months pregnant.

Dr. Bensky listened to Cole and said "he sounds great, everything sounds like it should."

We don't have to go back until January so they can check Cole out. Next time will probably be an echo just to see how flow and function is doing.

Then Dr. Bensky said we won't see him about once every six months until the next surgery, as long as no surprises come up. This my friends and family is great news and a relief to not be going to so many Dr. appts.


This is just Cole with his new Veggietales toothbrush that sings veggietales songs while he chews on it. Cole showed me just how much of a temper he has when I tried to make him part with it for just a second.




On a different note, I decided to give an old fashioned eczema treatment a try........................oatmeal bath. Here is how it went. Very messy. Cole thought it was breakfast and started pulling it off and eating it and gagging on it while I tried to apply more and keep his hands away.
Maybe I was suppose to fill the tub with water and oatmeal and let him lay in it. I made a ooey gooey icky paste. I think it helped a little with the dryness, but the angry red patches were still there. Maybe it takes more back to back baths. Regardless, Cole had fun and it may not be the cure, but it seemed a little helpful at keeping him a little more comfortable and less itchy.

Family Catch Up

This past Monday, September 8th, Cole had some of the family come meet him for the first time.

For those of you checking in and wondering who belongs to who and how are we all related. George and Barbara are Matt's Aunt and Uncle from his mom's side and Lynn is another Aunt, also from Matt's side.

We had some good laughs with PawPaw's jokes and Gigi just being Gigi and we love that she laughs right along with us!

We won't bore you with more riveting conversation about Cole suffering from severe eczema and finding an alternative to the steroids, which made up a good bit of conversation for the day.

We all were wishing we could have just an ounce of Barbara's energy playing with Ava. Ava was so excited to have found this new family member that she stripped down to her bare skin to show Barbara just how deep her love ran.

At one point while I was able to catch up with Lynn, who you would just have to meet and talk to, to know what a sweet heart she has and a very special family member to us she is. Ava loved Lynn's vest with the birdhouse and bird on it. She immediately assumed it was something made just for her to play with and was in Lynn's lap asking questions and pointing to the interactive vest.

George and Cole had a very sweet bonding time. Cole snuggled and George rubbed that sweet little bald head and kissed it. Cole snuggled right in and went to sleep. It was a special moment to see.

Poor PawPaw was so desperate for some tv time he asked if I could hit play on the Praise Baby DVD that had been in from earlier that day and had sat on the same screen waiting for someone to hit play. He was very patient to have sat through all of our doctor and health talk and just family catching up talk, so I was more than happy to push play for him. I'm sure he added that to his Greatest of All Times Movie List along with his favorite, "Roadhouse," with Patrick Swayze. He likes a little Steven Seeeeagal movie too:)


We sure loved seeing all of you and had a good time! Thank you for making the trip down! We hope to come that way and maybe we can get everyone together up there. Ava and Cole are in for a treat to find out they have more family and more cousins!

Take care everyone!
Laura

Summer Fun In The Wagon

Ava and I decided to put Cole's ability to sit up to the test. I pulled them around the porch very slowly.

Cole was more interested in laughing at his sister and Ava was more interested in trying to touch the tires as they went around.












Cole and I have had our days full with taking Ava where she needs to go and be picked up from. She is quite the busy almost 3 year old.

Hope all is well with everyone that checks in here!

Laura

Summer Fun

This past Sunday, the 3rd, Ava and I went to the pool. Daddy and Eczema Boy Cole stayed home since sweating brings on an outbreak.







That evening we went out to Gigi and PawPaw's house and PawPaw took us out on the boat. We ended up having to unzip Cole's life-vest because his cheeks could not be contained. He was so relaxed on the ride that he almost fell asleep with the breeze and being on the water. Matt chased Ava from the front to the back most of the time making sure she didn't make any last minute moves into the water. She was kind enough to give us a heads up early on by mentioning that she wanted to float in the water.

We also admired all the beautiful lake houses.................................Do you even call homes like that houses. They are much more than just a house. The landscaping alone is beautiful to look at. One of the homes had a pool house that we could have lived comfortably in and to wake up to that view every morning probably would be beautiful from their tool shed. Just kidding people with that kind of money don't have sheds. Anyways it was a beautiful summer night on the water with the babies and seeing their faces.

Even Better

Yesterday, Friday the 25th, we showed up for our post operative appt. with Dr. Besky and Dr. Watts. We walked up to check in and we knew as soon as they started looking up our name that the Progressive nurses once again were living up to their reputation.
We were informed that we were suppose to be there the day before and that, imagine this, Dr. Watts would not be seeing us because he was already scrubbing in for surgery. Of course.

Well, since we informed the discharge nurse in Progressive when she gave us the date of Friday the 25th that that couldn't be correct because Dr. Watts ONLY has office days on Thursdays and that is the ONLY day he sees patients for office visits. She argued with us and said not in this case. We accepted what she said and went on. Only to bring us to Friday, June 25th and standing there looking like a bunch of a**holes and not being seen by our surgeon.

While we sat and waited to see what they wanted to do, Matt sat there and graciously sat in for the Progressive nurse who had discharged us and got ripped a new one since she couldn't be right there for me to share how I really felt about all of this.

I was so frustrated because we had to wake Cole up very earlier to be able to take medications and eat and get downtown in time for his 8:00 a.m appt. Cole threw up and we didn't have time to let his tummy settle for more medication and food. I changed him quickly put him in the carseat and met Gigi and PawPaw coming in to watch Ava. They had gotten up very early to get there in time for us to get downtown in morning work traffic by 8:00 a.m.

Dr. Bensky was there and said he could do everything. He said if Dr. Watts came back later and saw something he thought he needed to see us in person about, they would call. So off to another floor for a chest X-ray for Cole. He had to go back into the funky cylinder with a bicycle seat. We learned that the two halves that make up the cylinder can be adjusted for bigger babies and he didn't have to be squeezed into it painfully like the last tech had done.
Cole still was not happy about the whole process and let us all know. I held his sweet chubby hands above his head and tried to talk to him while he screamed at me. I wore the fashionable lead dress again for all of this.

We went back down to see Dr. Bensky and he came in and told us "everything couldn't look better." The heart is nice and small, no fluid around it. There is no murmur. He sounds great. He was happy with the way the incision and chest tube hole are healing.

ANDDDD, really good news about the cath. for the collateral arteries. He said he doesn't think they are enough of a threat to have to go in right now. They are planning on putting coils in when they do the automatic cath. before the 3rd stage surgery, which is in 2 or so years. He said if his oxygen levels start to go up or they notice more flow into the heart than they are comfortable with, they will go in before the 2 years.
We are so relieved for a break from surgeries! God has gone above and beyond answering prayers and we praise him for this!

Cole's oxygen levels were at 84/85 which is right where they want him at this stage, so we were thrilled with more good news.

Dr. Bensky feels confident enough that we can return to "normal" for us at this point. Ever since Cole has come along we have been forever changed about the hand washing and coming into contact with people or items in public. I will never be ready for Cole to get a cold or any type of sickness that lowers Cole's oxygen levels any lower than he lives at, but that's not reality.

So a great dr. visit and report and here is the little guy last night at his cousin Bella's birthday. Sorry about the read eye. Cole's eyes do something funky with the flash because we have pictures of he and Ava in the same picture and her eyes are fine and Cole's have the red. We threw in a picture of Ava for those that, this is their only way of being able to see the changes in Ava and Cole as they grow.