Merry Christmas

All dressed up

We had a great Christmas. Christmas eve we went to Claudias (Matts aunt house)to celebrate. Cassie did just fab!! I was ready for her to be a complete wreck with all the people but she did just great. She loved the kids!


Walking with Grandma

On Christmas Day we opened presents under the tree with coffee. Cassie was so cute opening her gifts. We had both sets of grandparents come over to open gifts and have dinner in the afternoon and again Cass did awsome with everyone.


Opening presents


Playing with the other kids

Today we went to my parents to celebrate again. She has had a busy past few days and were so proud of her, that she seems to be getting better with others.

I have also started to brush her teeth, now that she is getting more than 2 I decided I need to start. She fought me the first 2-3 times where I had to actually pin her arms down and kinda open her mouth. Tonight she surprised me...I took out her toothbrush and said "its time to brush your teeth" she laid there and just opened her mouth and let me brush away. Wow! What a good little girl. I think she acutally enjoyed it.

Pictures and an Update

Cass kept trying to kiss me in this picture

We have been doing great. Cassie is doing awsome. She seems to be getting better with her stranger anxiety, she still has it but it seems better. She loves other kids. Her Uncle Jim was over with his girlfriend and her 7 year old daughter and Cassie loved her. Uncle Jim also brought over an 8 week old puppy they got, was he ever cute.


Talking on Mommys cell phone

Yesterday was a long day because Daddy was gone. We went to Kmart to practice our walking skills and give both of us new things to look at instead of walking circles in the house.


Still on the phone

I think I'm going to grow out Cassies bangs, she has so much hair and it totally has a mind of its own. It will be intersting in the growing out process.


Just up from a nap

Were looking foward to Christmas and being with family. Last Christmas we went to our familys and Cass was only 2 months old, we had to bring her feeding tube with us..it was then that she started to projectile vomit because the dietican was having us pump to much into her. Not fun. I stopped listening to what the dietican said and followed my own Mommy instinct. Still makes me mad to think about it...he wouldn't listen to me and was just going by his numbers. What a difference a year makes. Last year I don't think I could picture that the following Christmas we would be done with everything...we are SO grateful!


Yup....still on the phone


Looking dazed and confused from her nap


Play date with her friend Adelyn

Puppy!!!

New ways to get around

All of a sudden Cassie has decided she is actually going to try and find different ways to get from here to there...she must be sick and tired of waiting for me to help her out. I have been making her spend more time alone playing and giving her more time to figure things out on her own. She never spent much time on her belly because of the g-tube so now that its out we are making up for lost time. Today she was sitting in her bedroom and I was doing some chores, she ended up on her belly and instead of crying for me to help her stand she decided to try some new things. First she was in a pike position and then she would get up on her hands and push backwards...she scooted herself out of her bedroom into ours. It was so cute because you could hear her huff and puff with the effort and she was mighty proud.

Then in the kitchen she figured out she can push with her hands and this will slide her tush along the floor if she is wearying slippery pants....that was fun! She pushed her little booty all around the kitchen. She was quite entertaining today!!!

On the walking front she is doing awsome. She walks unassisted between Daddy and Mommy every day and has even walked to different rooms by herself.

We went on a playdate this afternoon, it was so nice to get out. The girls babbled and played while we had snacks and coffee. My friend had to run an errand and asked if I could stay to watch her daughter, which of course is no problem. Her daughter is 7 months old, I told both girls there couldn't be any crying for 20 min because I was outnumbered....they both did awsome, just played while I drank my coffee. Honestly if one would have started to cry it would set the other one off and I only have so many hands. Thank goodness they cooperated!

Thursday

This morning it was 3 degrees!! Brrr....
We usually have a play date on Thursdays but decided to stay put this whole week so Cassie's tummy can heal, plus it was so cold today I can't imagine walking outside with her even for a couple of seconds!!!



So today we just practiced walking....like we do EVERYDAY!! She has started taking her first steps unassisted. My heart goes into my throat just waiting for her to come crashing down and knocking her head into a table or on the floor. She will hang on to something and eye the next object she wants to walk to, get up her guts and make a dash for it...she has done pretty good and is so happy with herself.


Her hair is just out of control!! I wet it down in the mornings but once its dried it is everywhere. She doesn't like barettes and will pull them out, I now take hair band and pull the portion of hair that has a mind of its own into a tiny ponytail at the back of her head and wet it down...it seems to do the trick. I also think I am going to grow out her bangs....that will be interesting.

Good as new!

In her new footsie pjs

Cassie is doing awsome after surgery. She is so happy and she no longer has bouts of pain because of stomach acid leaking out. She is playing, laughing and happy...we are so blessed and thankful that everything is over and this is our first holiday without anything medical going on!! THANKFUL!!


Today after a nap


Today I made lasagna while Cassie played so all I had to do tonight was pop that puppy in the oven and heat up some Texas Toast. Tomorow I plan on doing a roast since it seems like roast weather. We are in for a doozy of a snow storm tonight...they are saying up to 13 inches so I figured after Matt gets home from work tomorrow we can have an nice filling meal before he has to head outside to snow plow.


Athena and Cassie....


Athena always there to eat what Cassie doesn't want

Cassie ate like a horse tonight...For dinner she ate spaghetti, 1/2 an avacado, tons of cheese, tons of manderine oranges and a tub of fruit. She had a nice warm bath, watched Little Einsteins with Daddy and is now snug as a run in bed.



She loves cheese so I try to put new things on cheese or under it to trick her..

We are....

HOME!!!! Everything went great. She was pretty sleepy yesterday before surgery, could be because she didn't have any energy because of not eating all day. We gave her the sedative which went easier than I thought. We then walked down to the surgery holding area. When it came time to hand her over to the nurse she actually surprised me and did very well....there was just a little whimper. They did have problems getting the IV into her, it took them 7 pokes and she already is starting to bruise. Surgery took about 2 hours and there were no complications. I asked our doctor if he thought the hole would ever have healed on its own and he didn't think so, he said there was a very well established tract so its a very good thing we went ahead with surgery. While in the surgery waiting area we saw Cassies Crainofacial surgeon, he was surprised to see us but it was nice to say hi to him. He is very talented and awsome at what he does! If it weren't for these doctors where would we be? They put so many hours in at the hospital and I am so thankful for them.

Recovery went great, they checked her vitals every 2 hours for the first 6 hours and then every 4 hours. At first we thought she may be getting a fever but it did subside. At 9pm her IV went bad, the nurse had to take off her IV Board and push the IV around in Cassies hand (painful) but she got it working and Cassie slept all night. This morning she ate breakfast and we went for a walk around the halls with Daddy pushing her IV pole behind her, then we got the orders to be dishcharged. Yipee!!! We are so blessed and thankful that everything went well and its all done.

I think we tend to forget how blessed and lucky we are just for the little things. I hate spending the night at the hospital and I don't like Cassie to have to be there hooked up to all the monitors. I know there are so many children and familys who are very sick and have been at the hospital for a long time, my heart goes out to them. We are just blessed to be home today, have Cassie sleep in her own bedroom and to sit curled up on the couch tonight eating pizza. Its the little things.

Thanks to everyone for thier thoughts and prayers!!

Surgery today

I am anxious!! I have barely been able to eat anything today because my stomach is in knots. You would think it would get easier being this is the 4th surgery but it does not! It is SO hard to hand over your child who is screaming and holding out her arms to you to the doctors to bring her back into surgery. I know I will break down in tears just like last time. This surgery is tough on me and I am sure her because its not until 3 this afternoon. She can't eat any solids or milk after midnight, she can only have clear liquids. This morning I tried feeding her some jello, which I don't think she cares for. She took 6 bites of it. She also took some chicken broth. It wasn't alot but at least something. She is actually napping now. I am hoping she has a decent nap and when she wakes up we will head to the hospital, we have to be there at 1:30. This surgery will not be nearly as horrible as the cleft plate surgery, its nice because it really is the end of a chapter. The g-tube site will be stiched up and we no longer have to wait for it to heal while she is in pain, changing gauze, applying ointment - it will be closed. We have also been spoiling little Cass, anything she has wanted we have gave her to just stop her from crying so she wouldn't cause the hole to leak...once its stitched up she is going to realize she doesn't get everything she wants. :)

We should be home early tomorow. This is not a 24 hour stay, just overnight so if all is well we will be discharged in the morning.

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

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.

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

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.

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 Updates

She sees us point the remote at the TV...so 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!

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!!!