Friday, November 18, 2011

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 nephrostomy tube (  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.

Monday, November 7, 2011

3 month update

Carson is now 3 months old!  He weighs 12 lbs and is 23 1/2 inches.    He is a wonderful baby and rarely ever fusses except when he is hungry.  His smile can light up a room.  He has the most beautiful blue eyes with specks of white in them (this is a down's thing called Brushfield's spots).   Looking at him you would never know about his poor heart and kidney. I sometimes forget about all he is dealing with. Unfortunately the doctors appointments tend to remind me of the future surgeries, health issues, and delays. Carson is one of the most loved and prayed for little boys I know.  Seeing him with his big sister and that amazing smile he has keeps me going.

We celebrated his first Halloween.  Carson was a puppy and Kaylee was Raggedy-Ann.  They were so cute.  Kaylee's costume was an old family hand-me-down and I was so excited she wanted to wear it.  Pictures to come...

The PT came last Thursday.  Carson is doing pretty good with his neck strength.  He tends to favor one side so we are really working on that.  She is working with him pulling everything into midline.  He gets re-evaluated at 6 months so I am praying that he will get even more therapy then.  As he gets older it is hard to see other babies slowly doing things that Carson isn't quite there yet at.  I know we will struggle with this his whole life, and I want the best for him.  I also need to not compare him to others and be proud of his milestones, whenever they may come.  A lesson that is hard for all moms in general.

Today we had a cardiologist appointment, which are always hard on us.  It is the reminder that Carson does have to go through heart surgery and we are so not looking forward to it.  I try to be positive and thankful that medicine has come so far and that he has a longer chance at life because of this surgery, but I still get sad that he has to have it period.  I feel like he is already dealing with so much...why this to?  We did find out today that his PDA (a vessel) has re-opened which doesn't really change anything since he has the have heart surgery anyway.  There is a chance it could close again before surgery. Carson's VSD (the hole) is the same and it is doing well.  They are still looking at surgery around 1 year of age.

In the next two weeks we have several more appointments.  We have 2 evaluations with Baylor for PT and OT, PT with ECI, The Children's Down Clinic, and his kidney procedure.  We are hoping this procedure/biopsy with tell us exactly needs to be done with the kidney and we can finally have that surgery.  We also have the Buddy Walk on the 13th which I am excited about being a part of.  I would like to thank everyone for the donations, thoughts, and prayers for the Buddy Walk.

Please pray for our little man and our family as we get through these next two weeks of appointments.  They can really drain us.  Thanks to our families and friends for helping with Kaylee so we can go to them all.

To end on a happy note: I just sent my wonderful husband and sweet little girl on a much needed daddy-daughter date. Can't wait to hear all about it.  Kaylee was so excited to get her daddy all to her self for the night.