Surgery is set!

That was our car, the blue one.

That was our tire.

Khloe and her dolly she got for Christmas.

Khloe in her Christmas dress.

Khloe saying "Hello!"

Jaden and Khloe swimming for the first time!

This is an up-close pic of Khloes lip. This is where they need to do repair on the palate. You can also see her gum and how it is twisted.

Khloe and Daddy bumming!

Khloe with the tape on her face. She just hates it!

We had doc appointments with Dr Franks and also Dr Young on Jan 8th. We also had a check-up to see how her developmental state is coming along on Jan 14th.

Dr Franks has now decided to have her lip taped until surgery. Her lip/gums are starting to turn outwards and it needs to be turned inward to have a successful surgery. So, she has to have tegaderm strips on both cheeks and then have steri-strips go from one of her cheeks, over her lip/gums and then to the other cheek. It is supposed to be pretty snug so there is pressure on it. We are supposed to do this daily. We have missed a few days as her lip has turned red and started to bleed as it took some skin off. We tried putting some aquafore on her lip before we put the steri-strip on, but then it slips off and goes into her mouth. We hate doing it to her, but know it is for the best. We are not sure what else to use to help with the tearing of the skin on her lips and gums. Dr Franks said that she will have her lip taped after surgery for a few weeks and also have restraints on her arms so her hands cannot reach her face. She is going to hate that as her hands are ALWAYS in her mouth! A week after her surgery, she will have to go back into the surgery room to get her stitches removed. I am not sure why she has to go back into the surgery room for that, but that is what they are saying. She has to be fed by a syringe for 2-3 weeks as she cannot suck on anything during that time as it will ruin what the surgery did. We are praying that she will not be too grumpy. They said it is a trying time for parents.

We asked Dr Franks if this would be her only surgery til she is 2. He said, he cannot answer that until he gets her into surgery. He needs to repair her lip and also her gum/small cleft palate. He said that if the incisions will be on top of each other, then he will have to do 2 surgeries. If that is the case, then he will just do the lip this time and then later this year do her gums/small cleft palate. If it is only her lip, we will only be in the hospital for 1 day. If they can do it all, then it will be a 2-4 day stay. Her other surgeries will be at age 2 or 3, then 8 or 9 and then the last one at age 17. The one at age 2-3 will be when they take some of her hip bone to build up gums.

Dr Franks scheduled surgery for March 18th. We will go back to him March 5th for the last appointment before surgery and find out what time the surgery will be.

Dr Young did a CT scan on her and found a lot of fluid behind one of her ears. That is one reason he is putting tubes in. He says that it might help her hearing a little and might not be has hard of hearing as what he was thinking. We asked if it meant that she would have 100% hearing back, and he said, no, as she has damage done to her hearing, but it might not be as bad. She did so good during the CT scan. They didn't have to put her out. She laid so still. I was able to stay in the room with her and she just laid there and looked at me. She was so good!!! I was praying the whole time!

We also went to see how her developmental state is doing. They say that she is behind some. She should be able to grab for things and hold her head up during tummy time. She cannot do that. They are saying this is from her encephlocele. Her muscles on her neck are very tight and they are thinking it has to do with the cutting that they did into her muscles during brain surgery. We are massaging it daily. She cries and cries when you make her turn her head one way or another. She likes to look forward and also sleeps with her head looking straight forward. She never sleeps with her head to the side as her muscles will not allow her too. I am sure her muscles will loosen in time with the exercises we are doing with her. Her coordination will come in time if we work with her and re-train her brain. If God has other plans for her, that is just fine!

We go this week Friday, Jan 29th, to her heart doc to see how everything is going. She will have another EKG and x-rays.

While we were at Mercy last week, we were able to stop in and see Jan from NICU. She is so amazing and remembered Miss Khloe. It was so nice to catch up with her. We tried to go to Andrea in Labor and Delivery but she was off already. Hopefully when Khloe has her surgery, we can catch up with her. Those 2 are wonderful at what they do and made such a difference in our lives!!! We love them!!

We also went to see Kate from Dr Mandsager's Office. She had asked me when I was at my 6 wk appointment, for us to stop in with Khloe when we were at her next doc appointment. So after Dr Franks appointment on Jan 8th, we went in and saw her. The Ultrasound tech that found all of Khloe's problems came out as well and wanted to see our miracle. She said that she hopes someday to be able to be Khloe's Ultrasound tech as well. We had such a wonderful support team before/during and after Khloe's delivery! We were and are blessed!!

We took all the kids and Khloe and Grandson Jaden for their first swim this weekend. They had fun but the water was a little colder than what they are use to for bath water. So they didn't last too long.

We are asking for prayer for Khloe during her surgery and we will keep this web site updated all day the day of her surgery. We are excited to show before and after pics. She will be red and sore for a while after surgery. We also ask for prayer for one of our cousins this week. She is having a c-section in Italy (They are stationed there) on Tuesday, Jan 26th. She is having a little girl, Tirzah, and they have found out that she also has a cleft lip. It sounds like it is a uni-cleft. They are also saying she might have a cleft palate as well. We are also asking for prayer for our friend who is 27 weeks along and who is on bed rest. Jan 26th will also be the 5 yr anniversary date that my 4 oldest kids lost their daddy. Please pray for them!

Just a few things that are going on in our household...Lenny hit a deer with his Grand Am in Nov and then 2 wks later (While we were waiting for the auto body to have time to fix it) a teenage hit and totalled Lenny's car when it was parked in front of our house. Then a few weeks later my dishwasher, 2 yrs old, died. It died the same night a car accident happened by our house and it tore the electric and phone lines off our house. It happened when it was just Khloe and I here and it was dark. It was scary listening to these people trying to run away from the accident and throwing people in another car to run and leave the scene. Then a few weeks later my daughters car, which Lenny had been driving as we had not gotten him another car yet, died. Then a few weeks later my fridge which is 2 yrs old died. We have had a trying few months. So because of the 2 accidents and then my daughters accident a year ago, State Farm sent us a nice letter telling us that they will be dropping us with house and car insurance. Grrrr!! We have found a new insurance compnay now, Farm Bureau! THANK YOU to them!! We need to buy 2 cars and have bought a fridge and dishwasher. When it rains, it pours. Oh well! We have 6 healthy kids and a healthy grandson. God has given us soo much and he continues to help us through!

Thank you for all your concerns and prayers. God is a great God! He has given us a miracle and I know he will be there for us through all things! THANK YOU!!!!

We also have joined Twitter (Not sure what I am doing yet on it. Ha) and we will keep it updated during her surgery if you would like to follow us on that.(Sassmangang). We are also on Facebook under 'Staci Vanderhart Arnett Sassman.' You can follow us on any of them. This web site will be updated as well during that day.