Boston..

I copied this post from my March of Dimes blog...super short on time today so if your reading this twice I'm sorry! :)



So after waiting three weeks, numerous phone calls and my anxiety going through the roof we have the dates for Kyle's inpatient testing. It looks like we are a go for April 13th. I feel good about this, scared because of the testing and that some of the testing involves anesthesia but happy that we finally will get some answers..

Friday we took the kids to the movies to see Monsters vs Aliens (for the record it was SUPER cute) I will say that for the most part I am used to the stares Kyle gets...he is 4 with oxygen and a feeding pump and people are I'm sure curious about this..I have to say I'm getting pretty sick of the twins comment...Kyle and Jack are not twins..in fact if you really look at them you can tell by Kyle's face he is older. Whenever we take the kids anywhere together we get at LEAST 5 times "are they twins??" when we say no they always ask who's older, this is then always followed by (IN FRONT OF KYLE) ohhhh he's so small. Kyle can hear...his hearing in fact is perfect and he knows when you are talking about him in front of him. I can see why people may think the boys are twins so I can laugh that off and explain that they are not...but seriously don't say in front of my fighter....wow he's really small....

Sunday morning we were reading the paper and Kyle walked by me, he said...Momma I'm really small right??? grrr....I told him...nope Big your perfect...your a big boy!! This seemed to make him happy and he ran off... Kids hear and see more than we give them credit for...I just wish adults could realize this...

XOO K

Heartache and Hope

Our trip to Boston was tough. I think that Mark and I have always had a good handle on Kyle medically, I have always trusted my instincts with him even when he was in the NICU...long before we would get blood work back saying he was sick I would know..Ever since Kyle started to have seizures last year and was admitted to the PICU I've had this pit in my stomach. Knowing that something just didn't add up, Kyle was diagnosed with dumping syndrome and we started to treat for that, what concerned me was that the only symptom we had was his hypoglycemia, nothing else. We were sent home on more medicines and told that he HAD to learn to eat by mouth. It was pushed and pushed on us until we also began to believe that we needed to get Kyle into an intensive feeding clinic. A few months ago Kyle had an scope placed through his esophagus into his belly to see if we could see anything that would be causing all the belly pain he has. At this time our GI dr told us that his Nissen wrap (that he had to have corrected 4 times) was to tight and that she had a difficult time getting the probe through...she briefly mentioned another surgery may need to be done to correct this before Kyle would be able to eat. We didn't think to much about this, at the time we were so focused on getting Kyle's dumping syndrome under control and his lungs healthy we foolishly put it on the back burner.

Fast forward to Boston , and the motility specialist telling us that Kyle's wrap was WAY to tight and that surgery was not an option, it would be much to risky. He also told us not no food could pass through it and they weren't sure how long it would take for the wrap to loosen up or if it ever would. For those of you that know our story you know that gagging and retching have been a problem for Kyle since birth, he has now been on continuous feeds (20 hours a day through his G tube) for months now...when he's not on his food he's in a alot of pain. The doctor explained that he shouldn't be gagging on continuous feeds and that clearly something is not adding up, he also doesn't feel like Kyle has dumping syndrome and is concerned that his body is now just so used to the food that it reacts that way when we take the food away.

We are still waiting for our scheduled date to go inpatient at Children's the motility dr will place a probe in Kyle's g tube and run it down through his intestines and we will be able to tell what is working and what isn't...we may also leave with a g/j tube which is a tube that will run into Kyle's jejunum (intestines)..There was also mention of going on TPN, but we hope to avoid that since Kyle would need a central line for that and we don't' have very good luck with those...

So that's it in a brief overview...I had a few days of being sick over some of this information and it hurts to think of the lifetime results of all his stomach surgeries, but I'm trying to be hopeful we are in the right place for now and we can get Kyle the relief he so needs and deserves.

Love

K

Happy Birthday Jack

Oh, it's been an amazing day...Jack turned 3 today...I'll admit I cried numerous times today, I can't begin to tell you what I would do to go back in time and have Jack all over again. When Jack was born Kyle was 16 months old, not walking, talking or sleeping through the night. I never did get to appreciate Jack's baby days...I slept about an hour a night and was a nervous wreck. I can't go back, but I tell you I appreciate this little kid so much..he makes my heart so happy..

As for Kyle, I will update with a more complete blog tomorrow, I didn't get into details about our Boston trip because I had not fully digested the info we got. I promise to share that with you all tomorrow...today we are hanging as a family and fully appreciating life.

xoxo
K

Wordless Sunday

HAPPY BIRTHDAY JACK...!!

Boston

Where do I start??? The appointment was good and bad, I guess..Basically we are waiting for an inpatient appointment for further testing, we did blood work today and we will see what those results say. The doctor we saw was great, he listened to what we had to say and based on that and all the testing we've had done already we will move ahead with some invasive testing. Clearly something is wrong, I don't want to fill this blog with all the speculations we talked about today, it wasn't easy to hear. I have always said that knowledge is power...I truly believe that..and while my head is telling me we need more answers it made my heart hurt to think about it. I thank god for Share and for the friends I've made through blogging, the resources I've been able to find...after our appointment I immediately sent a text to Missy (Sammy V's Mom) I needed her knowledge and her input and she made me feel more knowledgeable, which always helps me. We are home, and I'm trying to stay away from the Internet, cheese and rice ( ;) ) that darn google! Thank you all for the support, love and well wishes that you sent me...we are so lucky to have such an amazing group of family and friends behind us.
We are looking at a 4-6 week wait for the inpatient testing...
Kate

IF I HAD MY CHILD TO RAISE OVER AGAIN

If I had my child to raise all over again, I'd build self-esteem first, and the house later. I'd finger paint more, and point the finger less. I would do less correcting and more connecting. I'd take my eyes off the watch, and watch with my eyes. I'd take more hikes and fly more kites. I'd stop playing serious, and seriously play. I would run through more fields and gaze at more stars. I'd do more hugging and less tugging. Dian Lommas, from "If I Had My Child to Raise Over Again."


Just a little reminder...more to myself than any of you. I thank god for the world of blogs, I've meet my life long best friends on the March of Dimes http://www.shareyourstory.org website...I've found Mom's and Dad's and babies in the world of blogging that can understand me...they understand this life. I've found blogs that have left me sobbing at my computer...I've found blogs that have inspired me, touched me, comforted me.

There are so many parents out there that don't have one more day with their little fighters...no more play time or snuggle time. Today I just felt the need to remind myself that life is much to short.

We head to Boston in two days...it's not going to be easy. Kyle's been sick, he's on steroids and he's pretty grumpy, it will not be good when they start messing with his belly. Please keep my little guy in your thoughts..we need a little peace for him.

XOXO
K

Wordless Sunday...;)

This was Kyle, still in the NICU...we leave for Boston Children's hospital early on Thursday, we are so praying for answers...reguardless of what those answers are we need them.

vacation

We took the family. along with my brother and his family and my sister and her family down to Boston to the Children's Museum and to the CocoKey indoor water park this weekend. It was a blast! The kids were perfect...everything went wonderful. We had some moments of pain issues for Kyle but I think we are getting so good at seeing the signs that we can head alot of it off at the pass. His bowels are not working..so we've had to intervene a lot, but our BIG appointment is on March 12th at Children's...the cool thing was that we were able to keep him off his oxygen for a good part of the time at the Children's Museum. I'm starting to get nervous about Boston, I can't tell you how hopeful I am for some help, we are maxed out on medications so I'm praying....that this Dr can help...if not off to Cincinnati we go...I'm done waiting for results, we need to start being more aggressive!

If you all get a chance please visit http://www.zoerose.org this is an amazing website, I have been following this Mom for a long time her blog is http://3sorrells.blogspot.com/ and she is an amazing Momma to triplets.

Love

K