Not Everyday is a Good Day and That is OK.

So I have been waiting to update the blog until I felt a little more positive, until I wasn't having a hard day.Well I have been having several hard days recently.I decided finally that it was silly to hide it.The reality is that every day isn't easy, actually I have lots of ups and downs.I figure if one reason I do this blog is to let other people join our journey, I might as well be honest.Last week was a struggle with both kids.Kaylee has been having some behavior issues at school.As a parent you constantly blame yourself.Why is she doing this?Is she not getting enough attention?I do everything in my power to not always make things about Carson. We try so hard to do special things with and for Kaylee.We try to make his appointments while she is at school (which scares me this summer since she will be out for school).Ha, maybe we give her too much attention.Every parent struggles with giving their kids exactly what they need and dividing up your attention amongst them.

We also had Carson's first ENT appointment last week.I can't tell you how much I dread doctors’appointments.It is just a reminder of the fact that, yes, my son has Down's Syndrome, and all the health issues that come with it.I leave them depressed and feeling like we will never get a clean bill of health.Carson's hearing test came back a little low.The doctor is not worried about it because it isn't a very accurate test and he seems to hear.The more accurate one would require putting him under and we don't want to do that with his heart.Having said that, the doctor is not worried...Mom is.I know he can hear and never worried about it.Now I am constantly saying his name across the room in whispers to see if he can hear.Sometimes I wonder if going to the doctor just makes things worse.I know the whole point is to get a baseline and be preventive, but it is hard to hear that your kid has anything wrong with them. Actually I would love a doctor to tell me something positive about my child.In all honestly he is doing really well and has been a healthy baby especially with all he has going on.

Kaylee came with me to Carson's therapy today due to them having to reschedule.It is so hard to have to explain to Kaylee why the girl in the other room is 12 and can't talk, needs help climbing stairs, and help doing basic things.I tried to explain to her that God makes everyone different and she is so blessed to be able to use her words and to have strong muscles.She looked at me and asked, "Does that girl have Down Syndrome like my brother?"I wanted to bust out crying.At such a young age she gets so much.I don't know exactly what the little girl had, but I do know that Kaylee gets it.My hope is that this makes her a better person. A more tolerant person, a more understanding person, and someone who realizes how blessed she is.This truly is my hope for everyone.I believe that Carson was put on this Earth to show us true unconditional love, to remind us of how fortunate we are to be able to do things we take for granted.I love my moments I have looking at my family and feeling so lucky (not thinking about doctors, the future, health stuff), because I truly am very blessed.

8 months

Wow!!  I can't believe our little man is 8 months already.  The months are just flying by which has been really hard on me.  I can't tell you how much I want to freeze him right where he is.  Before his heart surgery, before he has to struggle, before life gets hard. 

Well let's see since the last post Carson continues to amaze us.  He started sitting up by himself right before his 7 month b-day.  He had his 6 month evaluations from ECI and met all of his goals so we got to add some new ones.  His goals now include crawling (or being mobile someway) and standing up holding on to something.  He is doing great moving in a circle one the floor and tries to inch worm but doesn't get anywhere.  He also stood holding on to the sand table while playing with his sister.  Carson is getting really good at manipulating a toy to make it work.  He is doing so well in understanding cause and effect.  Carson is such a determined little boy and works so hard to do things we take for granted. 

Carson was baptized on February 12th.  All of our immediate family was able to attend and we were lucky enough to have my uncle, aunt, and cousin bring my grandma, Carson's great grandma.  It was a really special event and we are so blessed to have such an amazing family and a great church family.

I have been having a really hard time lately with everything.  I think it is because the doctors appointments come in waves and he is about to have another wave of urologist, cardiologist, ENT, optometrist, etc.  We also have been filling out and reading about everything we possible can for financial help to pay for some of the therapies.  It is so hard to pick and chose what you think will be enough for him.  I think I am also dreading his heart surgery and the closer it gets the harder it is.  It is just so hard to look at my baby that looks perfectly healthy to me and put him through something so hard.  I know he has to have it, but it doesn't make it any easier and I am grateful he isn't showing signs of heart failure and hopefully will never have to.

On a good note we went to the urologist last week and for the first time his kidney is not dilated....Praise GOD!!  It looks like the surgery is working.

This past weekend we had a wonderful Easter with all my family.  We also attended my cousins wedding and Kaylee was honored to serve as the flower girl.  Pictures to come of everything.  The weekend before we got to celebrate Easter with Charles' family and the girl cousins went to see Mary Poppins with Gram and Gramps while Aunt Kay and Uncle Kris watched the boys. 

Thanks so much for all the prayers and support you all have given our family.  Carson truly is a blessing and while we have some days that are a struggle for us to get through, his smile keeps us going.

**Top two pictures by Diana Busch Photography**

6 months

So I am a little behind on things.  Along with turning 6 months comes lots of tests, and more doctors for our little man.  I am trying to keep everything up to date.

I can not believe our little man is 6 months old.  We almost made it to almost 6 months without being sick and three days before he came down with RSV.  It is so pitiful to see him so sick.  We have been very lucky and caught it really early.  We are still not out of the woods, but the breathing treatments seem to be working. He has a horrible cough, but his breathing is much better.  I am thankful for his wonderful pediatrician who had been very proactive with him.  I am very upset by the fact that our insurance chose to deny us (3 times) the synagis shot after the doctors, nurses, and us fought for it.  I feel this could have prevent him from being so sick. 


At his 6 month visit Carson weighed 13 lbs. 15oz. (he lost a little weight from being sick) and he is 24.8 inches.  This keeps him in the 50% for T21 curve and he is in the 3% for weight and 10% for height on the typical curve.  I couldn't be any more proud than to say under development the doctor wrote EXCELLENT!!  I can't tell you how hard Carson works for this.  He is now rolling over front to back and back to front, has good head control, and is working on sitting up.  The sitting up still has a ways to go.  His trunk muscles are where we see some muscle weakness.  We are working really hard to build up those core muscles so he can hopefully enjoy sitting up soon.

Right before Carson got sick we got to enjoy our first vacation to New Orleans as a family.  We went for my cousin's wedding and had a great time.  We loved being with the family, eating good food, and enjoying some good music.  Thanks to my very great friend Kelly for coming with us to help with the kids.  She is a brave sole to ride in the car with us for that long.

Carson tried sweet peas and carrots and seemed to really enjoy them.  I think this kid is going to love getting big boy food.  We were supposed to start oral motor therapy, but it has been delayed with him being sick.  My hopes is that the earlier we get those muscles working the better chance he has with his speech down the road.  I truly believe speech is so important for these kiddos which is why I have fought so hard to get him into speech at an early age.  He did go to speech for the first time this week.  They are working on giving me exercises to do with him at home. 

We had a cardiologist appointment yesterday and they did another ECHO.  Everything seems to be right now track for doing the surgery at around a year.  I can't tell you how much this surgery scares me.  I pray every time that maybe a miracle will happen and his heart will be healed.  I know the chances are slim, but I can hope for a miracle.  Until then I thank God for doctors that are able to fix his heart.

Today we did all his 6 month blood work for thyroid.  It is horrible to have to watch them poke and prod at your baby.  Good news is they got it on the first stick (even though it took 2 hours) and he was a trooper. Praying for good results from the blood work.

Sometimes the amount of therapies, doctors, money, and surgeries can get very overwhelming.  I have to take one day at a time. We have a lot of 6 month check ups to go to (ophthalomologist, ENT, blood work for thyroid).  I have to be extra careful because Kaylee is a worrier like me and she worries about her brother too.  I just look at Carson's continuous smile and my worries melt away briefly.  A friend of mine, who has a brother with down syndrome, said this to me and I believe it is so true.  "Your son will be an eternal optimist and completely free of worrying about the _____world that  we live in which is always a breath of fresh air."  Sometimes I wish we all could be a little more like that.

Carson's First "Food"

Carson tried rice cereal for the first time the other day.  If you know our son, he loves to eat.  He surprisingly didn't react much to it either way.  I was very thrilled that the texture didn't seem to bother him.  He seemed to do well getting his lips around the spoon once he got the hang of it.  Kaylee decided that feeding Carson is the big sister job that she likes best.  Poor Carson tolerated the spoon being stuffed into his mouth quite well ;).

Several people have been asking about his "tube" and what it looks like, how it works, etc.  I decided to post a picture of it.  It honestly just looks like a slit or hole in his waistline.  His urine drips out of it from the kidney into his diaper. The stitches have not yet dissolved, but it is healing nicely.  We go back in a few weeks for a follow up.

Happy New Year!

Happy New Year!!  We were blessed with a son 5 months ago today.  I can't believe he is already 5 months, yet sometimes it seems like these past few months have been a lifetime.  He is 24 inches and almost 15 lbs!  Carson is one chunky monkey.  You just can't help but want to squeeze him. 

On the 30th Carson had the first part of his two part kidney surgery.  We keep saying kidney surgery, but they actually went in and disconnected the ureter, removed the bad muscle at the end of it and rerouted it to a hole that drains into his diaper.  It basically looks like a cut in the bottom of his belly roll.  This does make it quite interesting when we change his diaper to have to watch out for urine coming out of two holes.  We were blessed to have both sets of grandparents up here to support us and take care of Kaylee. Carson did amazing with his surgery.  He is such a trooper.  The surgery took a little over an hour.  He was pretty drowsy for the remainder of the day.  He only had pain killers right after the surgery and after that had only tylenol!  After a night of no sleep for us (the hospital "bed" was horrible and the nurses came in and out ever hour almost),  Carson woke up smiling and was almost back to himself.  It is unbelievable to me that someone would be in such good spirits after having been through so much.  We thank God for the wonderful doctors and nurses who took such great care of our little man and also for all the prayers and support we had from everyone. 

We look forward to the New Year.  My wish it that God continues to give us strength and guidance to get through all of this.  I know that God has an amazing plan for our family and I need to trust in him for understanding.  I am thankful for the blessings I do have in my life including my husband, two beautiful kids, and amazing family and friends.  I wish each of you a happy, healthy, and wonderfuly blessed New Year.

4 months

So I am a little behind on updates with the holiday season.  We had a wonderful Thanksgiving and Carson got to meet lots of his Louisiana cousins, great aunts and uncles, and he got to see his great grandma again.  I thank God for the distractions of Christmas parties, gift wrapping, as well as our 3 yr old social butterfly.  After going non-stop for a month or so today has hit us really hard.  We had a Christmas party for a few of our close friends and kids last night and while chaotic, it is always lots of fun.  This has been a great distraction for me, but now that it is over reality is hitting.  The closer we get to Christmas the closer we get to Carson's kidney surgery.  The first part of his two part surgery is scheduled for December 30th.  I can't explain the emotions and worries that surface as each surgery or procedure approaches.  Not to mention the ever nagging feeling that even after he has all his surgeries, he still will struggle in life with down syndrome.  There is also the struggle of what therapies does he really need?  Which ones can we afford?  What is best of Carson and our family?  I guess with any child, as a parent, you have to make choices and hope they are the right ones.  We feel this is even more of a stresser with Carson.  We just want what is best for him and sometimes the overwhelming feeling of doing everything right gets in the way with just enjoying our sweet baby.


Here are some 4 month updates of our little man.  He weighs a little over 13 lbs and is around 23 1/2 inches.  He is in the 50% for the trisomy 21 curve and 10-25% on the typical growth curves.  His development is around a 3-4 month old, which is awesome for Carson! :)  He is holding his head up well and we are working hard on rolling over intentionally.  He is now grasping for toys and really raising his legs up.  He is still a very happy and content baby.  Caron loves to sleep and eat.  He has the cutest laugh and when he smiles his eyes light up.  He gets PT around 2 times a week and just qualified for oral motor/speech therapy.  We are still trying to figure out what program we want to go with and how insurance works with all these therapies.  We are really loving OCH Baylor and the therapist there.

Our family wishes each and everyone of you a very blessed holiday season.  Please keep us in your prayers as the 30th approaches.  While we are beyond blessed to be able to save his kidney and have such wonderful doctors we are still scared to death.  No one wants to see their baby go through surgery. 

*** Thanks again to Diana Busch Photography for all our awesome photos****

Kidney Surgery #1

Thank you so much for all the thoughts and prayers today.  Carson did great during his procedure.  They determined the kidney is functioning and the blockage is where the ureter meets the bladder.  The muscles on the end of the ureter didn't form properly and the urine is backing up into the kidney.  We have two options to fix this.  One is a complicated surgery that can take 3-4 hours and they doctor did not recommend it because of the risk and having to keep Carson under that long with his heart.  The other surgery is a two part surgery.  First they do something called a nephrostomy tube (http://www.chop.edu/service/radiology/interventional-radiology/nephrostomy-tube.html).  Basically the doctor will remove the part of the ureter that isn't working properly and attach a tube which will drain the urine until the ureter grows and the second surgery can be done in about 12-18 months to reattach it to the bladder.  They explained to us that the tube would just drain into his diaper.  We will schedule the first surgery soon.


To be completely honest I am very overwhelmed today.  I am very happy that the kidney is functioning and they can fix the blockage, but the whole idea of 2 more surgeries just kills me.  I feel like the down syndrome is enough to deal with on its on.  I had such a hard time seeing my baby go through this today and it was minor.  I keep thinking how am I going to make it through two more kidney surgeries and a heart one.  I can't tell you how happy I will be the day we are done with all Carson's surgeries and we can really focus on his development instead of his health.


We are so blessed to have such amazing, loving, supporting friends and family.  I could not do any of this with out you all.  Thank you, Thank you for all the prayers...we feel them.  Today as we were in the waiting room we felt an overwhelming support as we read all the people praying for us on facebook, and with prayer chains.


On  a separate note we starting doing Our Children's House Baylor in Allen for therapy and love it.  They are going to evaluate him for speech...yay!!   I really want him to have oral motor therapy since speech is something most children with downs struggle with the most.