Sunday, November 29, 2009

Thanksgiving Weekend

Plans kinda changed for Thanksgiving, we were SUPPOSED to go my parents house for dinner,however we stayed home because of Cassies surgery in a few days. It would also be to difficult and stressful if the hole leaked and caused her pain while not at home...its just much easier to deal with in our own house. Both our familys brought us Thanksgiving dinner over which is so nice and we really appreciate. It was deja vu from last year since we didn't go anywhere because Cassie was just out of the NICU.

Playing foose ball in our basement

My brother was home from California so we still fit in some nice visits. He came over on Thanksgiving morning, Matt and him ran out to get breakfast bagels and coffee - yum. We also watched some of the Packer Game. Around noon he went home to celebrate Thanksgiving with my parents but came back with dinner for us in the evening and we watched Boogyman 3. We love scary movies!

Cassie and Grandma

Friday my parents and brother came over for one last visit before Lee would leave for CA on Saturday. It didn't go very smoothly because Cassie had a bad episode with her G-tube. She was in so much pain, screaming and crying - it was horrible. She eventually fell asleep for the night.

My brother and Cassie

Yesterday morning we also had a bad episode. We actually called Childrens Hospital and almost took her to the ER. We want this hole to get closed sooner than later since its causing so much pain. She ended up falling asleep on our bed and slept for 2 hours, woke up and was pretty good so we didn't end up going. She still had moments where it obviously hurt her but it wasn't inconsolable crying. Only a couple more days to surgery!!! Not looking forward to surgery but looking foward to the hole being closed.

My brother and I

My brother and Matt

"Blast Off" She raises her arms like the cartoons do when the rocket takes off

Daddy and Cassie

Brushing her own hair

Yep...picking her nose

Wednesday, November 25, 2009

The "S" word.....

Surgery #4!!! We went to see a surgeon today about her g-tube hole not closing up. Its still leaking and it is just a viscous circle. When she is really crying she is putting force on her stomach and pushing stomach contents out of the un-healed hole which in turn burns her skin..which hurts and makes her cry/scream which pushes out more.....It is so sad to watch and I feel so helpless. We got to the doctor and her onsie was soaked with stomach acid, she of course screamed bloody murder with the nurses/doctors because of her stranger anxiety caused by the nurses/doctors :o) which of course makes her leak. She also has granulation tissue around the site which makes it bleed. So surgery is scheduled for next Wednesday. I admit I cried today when I found out she needs another surgery. She needs it but its so hard to have her go thru this again. They will cut the hole in her tummy bigger, pull the actual stomach out through the hole and sew that up, push it back through the hole, dissect the skin on her belly and sew that back together. Wonderful huh? Oh well, it has to be done and then this will be over and we don't have to worry about it leaking anymore.

Saturday, November 21, 2009

Picture Day

Whats out there....a big bad squirrel?

Enjoying each others company

Bad manners - talking with her mouth full of half chewed puffs :o)

Looking for Athena to join her at the door...

Modeling her new shirt from Faith Baby...tired of Mommy taking pictures

The serious look

Thursday, November 19, 2009

New Word Today

Daddy and Cassie

My brother flew in from San Diego yesterday so we got together with my parents and had pizza at our house. Cassie was a bit unsure of Lee at first but then warmed up and was playing with him on the couch. Today Lee and my Dad headed up North for deer hunting and will come back next week for Thanksgiving.

Daddy hanging Cassie upside down

Cassie is SO SO close to walking on her own. She now just holds on to one of our fingers and walks AND runs around the house. She runs when she thinks Athena is chasing her (Athena is just walking behind her)which she things is great fun. It has become a favorite game of hers to run from Athena and hide. Today she was running from me, Matt was walking her and I came up behind her and roared like a monster and she freaked out, she screamed at the top of her lungs...jumped and took off. It was the cutest thing ever. We played that game for a long time and she had a blast. Her throat had to be sore after screaming and laughing so much. I can't wait for her to walk on her own because all I do all day is walk her...she rarly sits and plays - just wants to explore.

She also started saying "Da-Da" for the first time today. She has said "Ma-Ma" for awhile. I think she couldn't say Da-Da until her palate was repaired. Today she just babbled, pointed at Matt and said "Da-Da". Its amazing how all of a sudden one day they just start doing something new like they have always done it.

Saturday, November 14, 2009

Heal, Heal, Heal!!!!

This little girl had a bad day yesterday. Morning was fine but the afternoon was not fun. Her poor G-tube site was so irritated and raw from stomach acid leaking out. It has been fine and only oozing but if she screams or pushes (bowel movement) she excerts force on her tummy and forces stuff out of the healing hole. This is what happened yesterday and the acid just eats away at the skin and I am sure it burns badly. She would be sitting down playing and happy then all of a sudden lean forward in pain and start screaming which in turn caused more stomach acid to leak out and burn more....viscous cycle. We called the Surgery clinic and the nurse said it is normal for there to still be leakage at the site 2-3 weeks after removal and what we were telling her did not sound bad (its bad when your there and trying to calm a baby in pain lady!!). She did say that surgery is a last option. We were thinking they would just sucture the hole closed but its not that easy. When they put the G-tube in they took the stomach and pulled it up and attached it to the outer wall. If they had to do surgery they would have to remove where they attached the stomach and fix that as well as some other things, she would also have to spend the night. Ok....we don't want to do that, we have had enough of surgerys so we are just praying it will heal on its own like the doctors are hoping. Actually today its looking the best I have ever seen it. I started putting neosporin on it as well as some another cream that acts as a barrier between the skin and stomach acid. I then put the gauze over the top and am using some netting over that to apply more pressure. Like I said - its looking very good today.

Wednesday, November 11, 2009

Wednesday Updates

She sees us point the remote at the now she does it. Cute!!

Cassie has FINALLY decided to feed herself. I gotta say, she really takes her time in deciding when she is ready to do something. She loves cheese, it is a favorite along with Puffs of course! Today we ran to the store so I put her in her stroller with a handful of puffs and she was happy as a clam...just slamming those puffs in her mouth. I had to replenish her stash multiple times. It keeps her happy!

Fell asleep on Daddy while watching her cartoons

She is also SO close to walking. We spend our days walking the house. I hang on to her hand and she walks and walks and walks and walks until my back kills me. Today she actually took 2 steps on her own before almost toppling over. She still has to work on her balance but is so close.

What is that on my tray?

Mmmmmmm...cheese - yum!

Sunday, November 8, 2009

G-tube healing

Cassie is doing great! Were so proud of her. Her G-tube site seems to be healing because we are not having the amount of leakage we did the past couple of days. The first 2 days pretty much all her food seemed to come out the hole. She was covered in sweet potatoes on night and like I said in another post it did NOT smell good. (Gag) Now its just oozing stomach acid....hey, that is better than oatmeal!! We are thrilled and releived its healing on its own because if it didn't we would need yet another surgery.

Grandma and Cassie

It was so beautiful out yesterday that we were able to get out and go for a walk. Grandma and Grandpa stopped over and visted. My Dad and Matt actually cleaned up all the leaves outside and then we had pizza. It looks like today is going to be another beautiful day out as well!

So BIG!!!

Thursday, November 5, 2009

In the clear!!

We had Cassies follow up appointement at Childrens Hospital so her doctor could look at her palate. He said it has healed great and she has no restrictions!! He said she could eat a pretzel tonight if she wanted....I am not going to do that because I want a couple more week of good healing time but its so nice to know we don't have to worry about anything. After that appointment we went to the GI clinic to have her G-tube removed. We waited there an hour but it is no longer in her tummy!! Its kinda gross until it heals because her stomach contents leak out and when they first pulled the tube out it gushed out because she was screaming bloody murder (then she also smelled like vomit...lovely)It only takes a couple of days for the hole to close up on its own, if it were to not close up we would need surgery but her GI doctor said it looked great and didn't see why it wouldn't heal up.

So...after over a year everything is done. No more pulse oximeter, no more G-tube, no more Haberman, no more Cleft Palate, no more taking care of her G-tube site every day, no more oxygen...we are done!!! What a ride and God defintily doesn't give you more than you can handle, this just made us stronger.

Sunday, November 1, 2009

Pig Tails

Today we got decked out for the Packer Game...Pigtails and all,however it didn't help us win. Oh well.

Saturday we FINALLY got out of the house after being shut up for 3 weeks to keep Cassie healthy. We went to the coffee shop, grabbed a mocha and sat in the bookstore. Cassie sat on the ground and looked at books, we ended up buying her one of them that she really liked. Afterwards we ran to Target for a few things and browsed around. Near the end Cassie wanted to walk so I had to hang on to her hands and walk the store with her (her balance is still not there but she wants to walk)

Today we watched the game and Grandma And Grandpa Rosek came over to visit. We made our traditional nachos to eat while watching the game. Later Uncle Jim even stopped by. Cassie was not sure about things at first and cried big alligator tears, once she was ignored she calmed down, realized no one was taking her away and was happy.