Our trip to Children's Hospital for Matthew

Wow, what a long day. Matthew, mom and dad did fine. The doctor answered all 31 questions that I had written down for him. (Plus some from dad.) Matthew was on HYPERDRIVE OVERLOAD (darn those Spiderman snacks!) doing circles around the doctor! One good thing was that the doctor could see Matthew's fistula "UP CLOSE AND PERSONAL" because daddy was holding him upside down! Also, Matthew was ALL TALK for Dr. Murthy! I think the doc was amazed and shocked how well Matthew could speak since last seeing him! He wanted to hear Matthew say Bye, Bye, about 5 times! He was definitely impressed!!!! LOL

Gosh, so much to say in a short article. Here goes......

Because of the time it will take to fix Matthew's fistula, Dr. Murthy will NOT do a nose and lip revision. The fistula needs to be the functioning item to be fixed (and we totally agree) and also because the fistula will have part of his nasal cavity upset as it is, we don't want to do more harm when it's "puffed up" (swelling). We are good with that. It will be every bit of 2 hours JUST for the fistula alone!!! He has to fix the inside, inside part of the palate, and then the outside, inside part of the palate! *stay with me! Just think about it.......layers inside your mouth!*

THEN, as if that wasn't enough, Matthew will have his urological issues dealt with, which will also be 2 hours worth. (give or take some time) OUCH!

The week before we go to the hospital, our own pediatrician will do last minute PRE-OP stuff for Matthew. 24 hours before surgery, we will be called by the hospital to say what Matthew needs to eat/drink (or not). And on September 10th, we will drive to Children's Hospital at a VERY EARLY TIME! (As daddy would say, before the chickens pass gas!) At 9:30am, he will be operated on. The OR is reserved for a little over 4 hours for him. He will be in recovery for a short time, and then back to his room the rest of the time. *Mommy will be with him the whole time.* (Providing everything is ok and normal *talking about going home*.) If he can eat food/liquids the next morning/day, Dr. Murthy will release him, not sure about Dr. Kalloo. (not sure how long she wants Matthew in the hospital) If Matthew cannot, or will not eat, HE WILL NOT BE GOING HOME! It will be difficult for him to eat after surgery!

Here's the catcher! 3 weeks, NOT 2! 3 weeks at least of wearing TOTAL ARM RESTRAINTS for Matthew!!!! Arms straight out, not able to touch the mouth! AT ALL! NO SPOON feeding, nothing in the mouth for at least 3 weeks!!! NO SOLID FOODS for 3 weeks!!!! NONE! Everything has to be liquified! (Boy is Matthew going to NOT like that!!!!) NOT A HAPPY CAMPER!!!! And the urological issues? OH GOODNESS! Potty training or not, he WON'T be a happy camper for at least a week after his surgery. Mom will be nursemaid for at least a month! Oh boy!

PLEASE SEND YOUR BEST RECIPES for blended smoothie's! or blended food! I could use them!

It was a pleasure to go to Children's Hospital today! The folks there are so nice! So helpful! I'm so thankful the Lord led us there for Matthew! Dr. Murthy is such a humble, sweet man, young and KNOWS the cleft kids! He understands their problems and sufferings! I am so, so thankful to God for him!

Mom

The Great News...

I guess we have kept you in suspension for long enough so we'll break down and give you the great news. Matthews surgery is now scheduled and pending our confirmation he'll be going under the knife on September 10th. He will be cut, nipped and tucked in all ends of his little bod, all at once poor guy. We figured that it would be better for us that he hates us from the pain just once and not from multiple surgery dates. Please pray that he will not hate us to much for doing this and that all "systems" will be "go for launch". Also pray that us parents keep our wits about the whole ordeal and that Rebecca will take it in strides.
The kid's daddy

While you wait for the Great News....

Today we took a little field trip to Sears Portrait Studio and had our pictures taken. Here are a couple of samples from the session. Enjoy!




The Dad!

The "almost" great news?

Still waiting folks...........sorry. I guess perfection takes time! LOL


It's about Matthew, so still stay tuned! BY the way.........Matthew has now grown PAST his sister. He's taller then Rebecca now. I tell ya, he's going to be tall! He's skinny and tall! Rebecca? Well, she's more shorter and um, solid. :o)

Matthew goes to Children's Hospital this coming Wednesday. Keep us in your prayers. Oh, also an "unspoken" prayer request. Please.....thank you. We appreciate it.


Ki (aka, MOM)

COMING SOON...............GREAT NEWS!!!!!!!!!

Stay tuned! It's just about here, but just working out logistics! STAY TUNED!


Might have something by this afternoon! :o)



Momma

Happy, Happy, Happy!!!!!

Oh I just love Matthew's doctor at Children's Hospital!!! (Dr. Murthy) He's been in constant contact with us via EMAIL! (It's like someone told me, what doctor do you know who will EMAIL you about your son and keep talking with you!!!!) He's been AWESOME!!!! EVERYTHING IS A GO!!!!!!!! Surgery is a GO!!!!!!! We meet at Children's Hospital on July 18th, 11am. (gotta make sure we are at the metro by 8:30am though........or we will never get a parking space!) We have a "double booking" appointment for Dr. Murthy to go over everything with us. (so far, what we know, Dr. Murthy wants to do some lip revision/nose revision, fistula repair, possible tubes? Not sure about this.....And Urology wants to do, a circumsion, herniated groin fix (putting the intestines back in place), undescended testical fix. Gosh, isn't that enough. Yes, he will be hurting up and down! Motrin will be his FRIEND! Momma will be his nursemate at home, providing everything goes well at the hospital and he can come home with no problems. *fingers crossed*) We will also start pre-op stuff with Matthew.

NOW........we just need to keep Matthew sick free, medicine free, well, you know the routine........from now until we walk into Children's Hospital the day of his surgery. I'll be staying with Matthew during his stay at the hospital. Daddy will be with Rebecca/working.

Right now, we are working with another lady to get an OR appointment. It may not be ASAP........they said the summer months are BOOKED SOLID. So I'm thinking we are looking more like from September to November? Which is fine by me. Things are falling into place now and I tell ya, YOU ARE YOUR CHILD'S OWN ADVOCATE! Someone once told me that and now I fully believe it! That and praying for my son to be helped! I think God had more to do with all of this than me! ;o)

So, as soon as we they can get the OR booked, we will have a date! YEAH! YEAH! :O)

Matthew will no longer have to endure foods/liquids coming out of his nose anymore! HALLELUJAH! As I told the doc, now that he is in daycare, the kids notice him doing regular "cleft kid" type of stuff. Thank you Lord for this taking place now! AWESOME!

Kristen

YEAH! We have movement on Matthew's pending SURGERY!

We finally got an email from one of the Craniofacial doctors and it's the one who has been thee nicest to us from the beginning. (Dr. Murthy) He wants to meet with us and Matthew for a re-evaluation because of the Uroglogical issues that Matthew is having. Surgery could be right around the corner! THANK YOU LORD!!!!!!!!

Please pray that we can get EVERYTHING fixed, including the major thing (besides the herniated groin), the FISTULA! (hole in the roof of his mouth) Right now, he is almost finished with his augmentin for the infection. This makes his 3rd infection since we brought him home in March! *sigh*

I'm hoping we can get Matthew's hearing re-evaluated also........or we may have to wait until October or November. He speaks without saying the beginning of words. Like his favorite person in the WHOLE WIDE WORLD........SPIDERMAN. (comes out idamonmon) Please, oh Please Lord, I'm hoping for some speech help soon. One thing at a time, I know..........I just want our boy to not fall behind. Right now, he IS behind in speaking well.

Keep your eyes, fingers, toes, anything else, CROSSED for us! I make the call today to see Dr. Murthy at Children's. PLEASE allow this surgery to move forward to fix EVERYTHING! AMEN!

Mom