God is in control......

Have you ever just wanted to pack up your family and just run away from life? Run away from reality? Live carefree. I have been there the past few years as I am sure many have. There are times that I think.... ‘Ok God.... I’m to my breaking point, please do not ask me to bear anymore.’ For some reason, God thinks we can handle more and.....He is right, I have never ran away in the past 40 years.  Well, besides the few times during my life when I tried running away from home at a young age. I remember walking up the long gravel driveway and hiding behind the “Neal Deaton Shop” thinking that I am teaching my parents a thing or two. About a 1/2 hour later, I would come back home and my parents acted like they didn’t even notice. They knew that I wouldn’t go too far and wouldn’t be gone long at all. 

There are times as a Mom that I have wanted to run away thinking, ‘How did I go so wrong? Is that really MY kid? My child really wouldn’t act like that or do something like that.’ I am not one of those parents though that think my kids do no wrong.... I am one that I will believe...... they probably did. 

There are times as I wife, a daughter, a sister that I have wanted to run away. I feel like the laundry is never ending, 5 loads a day is no fun. The dishwasher is running at least 3 times a day, the floors are mopped at least 1-2 times a day because there was either something spilled, some project that ended up getting more glue/paint on the floor then on the item, or there was a issue and the diaper didn’t hold it all. The grass needs to stop growing, but the grass needs to start growing in the empty spots that look like it could be a small dirt trap for boys. The house projects are never-ending... and I mean never ending. We have a few that have been 1/2 way done for a few years. Ugh....

There are times that I wanted to run away from Doctors, Nurses, PA, Specialists, Hospitals, Appts, testings. No more holding her down for Blood work, and poking for hours, no more tears as she knows something is up, no more ‘Go to sleep baby girl for the doctors and we will be there to hold you and kiss you when you wake.’ No more wondering what is around the corner, or what will the doc say next. 

God always has a way of showing us that running away from our problems, is not the answer. I will stay awake at night worrying about one thing or another...but God is always right there working it out. God tells us to put our trust in Him and Come to Him with our problems and He will help us. I need to remember that...but there are times that I still try and take care of it myself. The human nature thing is to worry until you come up with a solution.

The bible says so many things about worrying and to trust God. I try and remember a few verses that remind us: 

“Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you” (1 Peter 5:6-7) 

“Then Jesus said to his disciples: ‘Therefore I tell you, do not worry about your life, what you will eat; or about your body, what you will wear. Life is more than food, and the body more than clothes. Consider the ravens: They do not sow or reap, they have no storeroom or barn; yet God feeds them. And how much more valuable you are than birds! Who of you by worrying can add a single hour to his life? Since you cannot do this very little thing, why do you worry about the rest?’” (Luke 12:22-26, NIV)

The past few weeks have been a little stressful. We are planning a return trip to Ohio and not having much luck with reasonable lodging, we have a few unexpected financial issues come up,  a few medical things come up, the kids have sooo checked out of school a few weeks ago and the nightly fighting to have them do homework is a struggle,  The to-do list keeps getting longer (Water in the basement is one of many... but I think that is about everyone the past few weeks), the kids locked the keys in the car (And of course the spare set as well. It doesn’t seem like a big deal... but it was just another thing to add to the list of, ‘Please God.. have something go right this week.’ ) I think when we have one of those ‘weeks’ everything seems so much worse than what it is. 

As I was loading up one of the daycare kiddos in the car to bring to preschool this week, My mind was wondering how to handle some of these issues. Khloe likes to go with me to take the kids to preschool. She had informed me that she needed to go potty, So I took her out of the car seat and had her go in to go potty. I was watching her while buckling up my daycare kiddo and it was like God made it so clear to me. I watched my little girl, who has fought to be on this earth, fought to sit-up, fought to walk, who is to be mentally challenged because of brain damage, still fighting some medical issues.... skip down the sidewalk to the house, singing, ‘Twinkle Twinkle Little Star.’ My worries left my mind as a smile came to my face... and tears followed. 

I need to remember all the ‘blessings’ God has given us and be thankful for what God has and is doing for us....instead of worry about the ‘what if’s’ and ‘How will we do this or that.’ God will take care of it all..... I trusted him and put all my faith in Him with one of my precious earthly possession..... my daughter.... and look what God did! 

Thank you God for getting my mind back on track and remembering that you are in control and if I give you all my worries... and my troubles....no matter how big and small..... you will make it all work out. 

Well, it has almost been two years since I started this blog and I feel like we are living 2010 all over again.

Khloe will be admitted to Cincinnati Children's Hospital on May 14,2012 for her 4th surgery for Complete Tracheal Rings. The surgery is to take between 8-10 hours (Depending on how bad the scar tissue is once they get in. They said it will take at least 2 hours to get her opened up and on the heart/lung bypass machine. They can then start on the airway part of the procedure.

They are hoping and praying that she will be able to go without a trach after this surgery and will be able to talk. They will come out every hour and a half to give us updates on Khloe and how surgery is going.

We will be updating caringbridge all day. The caringbridge web site is www.caringbridge.org and then type in khloesassman

My heart hurts...........

All of us at the pool!!!

After this posting.... I am going to change this web site into the family one and just keep caringbridge as Khloes medical issues. :) The caringbridge site is: www.caringbridge.org/visit/khloesassman

I am writing this with tears streaming down my face. Today everything has just hit me. I just want to take her place, I want to take this pain away from her. I want to go through all of this for her. God has a reason for everything, and right now, I just want to cry out to him and ask 'WHY?? Just show me why?!" I know there are people out there going through things worse than us and I feel for them. So, I know I should be happy with the situation I have and I am soo glad that her problem is fixable.




We met with Dr Davis today. He is from Cardiothora​cic. He explained his part of the procedure. He will be the one putting Khloe on the heart-lung bypass machine. He said he has to move her heart out of the way and help with the cutting of her chest. He explained the risks to us. He told us that if Khloe doesn't have surgery, she has a 4 out of 5 chance of dying. He said that if she does have the surgery, then there is a 1 out of 5 chance of losing her. He said that she is slowly suffocating as her wind pipe is smaller than a coffee straw. The normal size for her age is almost 3 coffee straws put together. That really put it into perspective for me. I was trying to fight back the tears when he was telling us infomation about the surgery, but I had a few tears running down my face. I quickly apologized to him and he said, "You know what?? If you didn't cry and wasn't scared... I would think you didn't understand how scary this procedure was. He said.. I know you understand.' He also told us that he has next week Wed and Thurs open and the following Wed and Thurs. So any of those days would work for him for surgery.



We then went to see Dr Smith. We had a few questions about the surgery and he was able to answer them. One of the questions was that a normal person with "C" shaped rings, has membranes on the open side that help it expand. Well, they cannot make membranes and they are closing it all back up..... so how is it going to expand with her. He explained that the part they are cutting out of her windpipe and then patching it back together with that part.... they are going to turn inside-out. He said that it will stick out more and give more flexibility. I also asked if the rings can grow together again. He said that they can on rare occasions and that she will have to be checked yearly for the rest of her life as to how it is going. They had us sign consent forms for the surgery and went through everything with us. Dr Smith said that one of the reasons he wants this done before August is.. he is leaving for 5 days and he wants it over by then. He said that Khloe will still be in the hospital but his partners will take over.



Dr Smith then asked us if we wanted to meet the other family. Lenny immediately said, "Yes, please". Dr Smith said that he asked the family last week if they would talk to us and that they have told them about us and some of Khloe's other issues and they said that they would love to talk with us. So, after everything was signed Dr Gooi took us up to PICU. We met with Brailynn's mother. (Her name is Staci also. Wow!) She then took us into the room to see Brailynn. My heart hurt when I saw her.... They say that she is doing good and that she might be able to get out of PICU this week. She tried to cry and it was so soft. I asked her mom if that was because of just getting off the vent a week ago. She said, No, her vocal cords are paralyized and that is how is cries now. She said that it happened during surgery and Dr Smith said that 70% of the time they heal. It could take 5 wks or 5 yrs but it could come out of it. Oh that poor girl. I wanted to cry for her. Staci told us many things that we didn't know and I think her insight was VERY helpful. We were in her room for an hour. I asked if I could sleep in the room with khloe when we are up there and she said 'yes, but they do not advise it. When the nurse came in, Staci told her that I wanted to stay in PICU with Khloe when she has her surgery. The nurse said, You sure can but we tell parents not to, as these machines go off all the time. The IV, the breathing machines, the drain tubes, the oxygen levels, and all the other ones. She said that no one can get a full nights sleep. (I didn't have the heart to tell them that I do not have $15 a day for the rooms that they have for parents. They also charge $15 a day for parking. So, $30 a day total for both and take that times 30 days. That is $900. My money has to go to gas/parking​/food.) I am sure it cannot be that bad to sleep in the room with her.



The nurses were real sweet up there and came in and kept talking to us and telling us things. They asked Khloe if she was gonna come be a patient of theirs.. she just smiled at them. :) It is really neat as Khloe can have visitors after the 3rd day, so her brothers, sister, nephew and cousins can come and visit. (Others can too) They told us that they give each room 2 tokens a day to be able to go into the family lounge and get a pop and chips or candy bar. Walmart sponsors that. They said that there are times that people/plac​es bring 2-3 boxes of donuts and put them in the family lounge for the parents of kiddos in the PICU. I never thought how much a box of donuts or cookies would mean to a family whose child is in PICU. It makes me think twice about how many times i have donated to the foundation at Wal-Mart and how easy it would be to bring donuts/cook​ies or anything up to a PICU anywhere.



So right now, we are waiting for a call from the schedulers as to when pre-op will be as she needs to have blood work done and everything else that goes with pre-op. They will also tell us at that time when the day of the surgery will be. She is to call us this week.



Oh, I almost forgot... Khloe went to her audiologist on Friday and her hearing did NOT get worse. It didn't get better but we are sooo happy that it didn't get worse. YEAH!!!!!! She also got a tooth on the top of her cleft. So, she has 3 teeth now. :)



When we got home from Iowa city tonight, Judy Lauterbach had brought us supper. It was so nice to not have to think about making that after a long day in Iowa City! Thank you soo much!



We know with all of the thoughts and prayers going out for Khloe, that she will be ok. God has her wrapped in His arms. It is just hard not to think of the "What If's...



Please keep passing her Caringbridg​e out, please. Pra​yer Chains, friends or anyone. We need all the prayers for her that we can get. We are soo happy that God gave her to us. She is an amazing girl and such a fighter. God could not have given us a more perfect child. God has a plan for her.. I just wish God gave us those answers right away... :) We went as a family to a family aquatics center this weekend as we promised our kids last weekend we would. There was a girl about 9 yrs old that asked about Khloe and her cleft. Instead of just staring at her like many do, this little girl, was full of questions. She looked at Lenny and said, She is such a special girl and so pretty. She is soo right. She is a special girl and her problems just show how special and how much of a fighter she is. Thank you for keeping tabs of Khloe Lane.



We have an appt with Physical Therapy Friday in DSM and then Monday she goes back to Pulmonary in Iowa city for a 2pm appt for see how the neb treatments/​inhaler and percussors cups are doing. i will update as soon as we hear from Iowa City as to when the surgery date is. They are to call this week.



Thank you for thinking of us and praying for her
 
UPDATE:: SURGERY IS JULY 21st!!!!!!

Doc appt with the ENT

Khloe getting her breathing treatment. Jared was helping her with it that night.
Khloe playing with a toy and Jaden trying to decide what kind of toy it is.
Khloe decided that mommy needed THIS purse. She loved standing in it and gummin the straps.
Lenny and Jaden when Jaden was in the hospital
My sister and I trying to entertain Jaden as he was getting fussy being in the hospital
Jaden and Khloe showing off their St Paddy's Day outfits.

Last week Khloe and Jaden came down with RSV. Little Jaden ended up in the hospital but Khloe fought her way through it and was able to stay out of the hospital. They are doing better this week.

Khloe had a a pre-op visit with her reg doc, this past Tuesday for her ABR (BEAR) test that she is to have next week Friday (March 5). Dr Frost will not sign off on it yet as she still sounds icky and doesn't want her sedated if she still sounds bad next week. She will be sedated for 2-2 1/2 hrs in the OR at Methodist. This test will tell them how her hearing is. We are so excited to get the results.

We went to her ENT doc today for a check-up. They found that Khloe has infection in her right ear. It is infected where they put the tube in at. It was so full of infection that they couldn't even see the tube today. (She has not been able to wear her hearing aids since getting her tubes in) They had us go to a different room and they strapped her down (With daddy and I having to hold her down as well) and they put a wire in her ear and cleaned it all out. It was nasty, but needed to get done. He said that the way her ear is formed inside, the drops are not making it all the way down there. That they are just healing the first part of the ear.

We have to go back next Thursday, March 4th in the afternoon as he wants to do it one more time before her ABR (BEAR) test. That way we get a good reading on her hearing. So, now all we have to worry about is her regular doc signing off on it, so we can get it done. We are praying that her lungs start sounding better. We are doing treatments every 4 hrs now instead of every 6 hrs.

We have a new prayer request. We were told today from a family here in Newton, they were told that their son, who they are pregnant with, might not make it. He has a hydrocephalus. They are to have a c-section at Mercy Monday. Please be in prayer. We know that with God all things are possible and we pray that they will have a miracle as well. They were told that he has extra fluid on the brain just like Khloe has. Pray that all things will go well! Pray for peace for the family and a miracle for baby Adam.

Also, keep in prayer Duncan, (almost 5 months old) who has had his cleft surgery and is doing good but is fighting with reflux. Also for Tirzah (1 month old) as she meets with her cleft doc for the first time on March 5th. It sounds like they are able to stay in Italy for the surgery.

We will keep ya updated on Khloe Lane and the other kiddos.

Thank you for all your guestbook signings. We read them all and it brings a lot of joy to know everyone who is out there supporting us.

I want to say THANK YOU to Jen Norvell, Mickey Van Baale and their sorority for what they have done for us! Thank you!!!

Doc appts in Iowa City

Khloe ready to go to the doc appt in Iowa City
Khloe is listening to daddy telling her a story. (Daddy needed to shave badly)
Khloe bumming on the down filled comforter and pillow
Khloe and daddy taking advantage of the pool area
Khloe in her outfit from the Breuers! Thank you Breuers!!


We have started a caring bridge for Khloe. I should have done it way back in May. Sorry. It is www.caringbridge.org and then type in khloesassman You can sign up to get e-mails when the caringbridge site is updated with news of her. Caring Bridge is so nice and we can even add pictures on it and we also enjoy reading all the guestbook when people sign it. It is such an encouragement. THANK YOU!!! Go there and check it out.

Well, we went to Iowa City Sunday night so we could get to the hospital by 8 am Monday morning. Our appt was at 9, but we had to be there early for paper work and blood work. We met the new doctor and he is WONDERFUL! We knew that God had a plan for us when we had to switch doctors and he did. Gods hand was in this the whole way. We had to meet with many different docs and nurses. One of the nurses that will be with us through the next 17 yrs, has had 2 of her own kids with cleft lip and palate. It was so neat to be able to talk with her and she showed us picture of her kids before surgery and what they look like now. She has a son who is a jr in college and a daughter that is a senior in high school.

Dr Canady asked us to explain everything that Dr Franks had told us. After we were done, he said, 'Well, every doctor does things differently and I do things different than what you have been told.' He told us that we could have a surgery done next week and they would put a tuck in her lip right under her nose. Then 6 months later they would do the rest of the surgery. (The tuck would help when they did the complete surgery, to relieve pressure off of the incision as there isn't a lot of skin there) Otherwise we could wait til she is 6 months old and he could do the surgery in 1 step. We told him that we didn't want 2 surgeries if we could help it, so we will wait til she is 6 months old. We were looking at dates and he is full for the month of April, so we picked May.

Dr Canady is doing things so differently then Dr Franks and it is for the good. Dr Franks had told us that he has kids go without bottles and binkies for 3 wks after surgery and they have to be fed by a syringe. Dr Canady said that he quit doing that years ago and allows bottles/bin

kies the day after surgery and sometimes he will allow kids to have them back hours after surgery but it depends on how they do. He said the only thing that he doesn't allow is spoon feeding for a few weeks afer surgery as that will hit the incisions. She will have to wear arm braces for 2-3 wks after surgery (aka No-No's) so she doesn't put fingers (Or in her case, the whole fist, in her mouth). He said that we could go ahead and start feeding her baby food now. We also met with Speech Pathology, Orthodontics, Pediatric Dentistry, Prosthodontics and Oral surgeon.

We started Khloe on baby food this morning and she is loving it.

Iowa City told us to call our insurance company to get pre-authorization for surgery. I did that this morning and they were trying to tell us that it is cosmetic surgery and they do not cover that. He kept arguing with me, so I asked for a supervisor. To make a long story short, they said that they will probably pay for it but they need Iowa City to fill out some paper work and then they will decide. I called Iowa City back and talked with them about this situation. They are going to fill out the paper work and told us not to worry about it as they have gone through this before and it will be covered.

We also had to call call Khloes Cardiologist as Iowa City wants written documentation that her heart doc says she is healthy enough for surgery. Dr Mooradian called me right back and said, I will get that done for you right away and said that he is anxious to see Khloe in June and see the new and improved Khloe.

Then we called Khloes Audiologist as we were to call her when Khloe had gotten tubes put in. (Yes, I'm a week behind, but today was doctor calling day. Lol) I talked with Diana and she said that she needs to call Khloes ENT and she would call me right back. When she called back she said that Dr young wants to do the BEAR test as soon as it can be scheduled. She is to call tomorrow or Thursday with a date for that. Khloe will have to go 5 hrs without eating again and she will be sudated for 2-3 hrs in the OR while they do the BEAR test (aka hearing test) We are hoping that they will wait for a week or 2 as Khloe is having a lot of discharge from her bad ear. I told Diana that I have not put the hearing aid in since her surgery as the discharge is bad. She agreed and said not to have her wear them til she sees her. Dr Canady had looked at her ears yesterday and thinks she has an infection and told us to keep using the drops til we go see her ENT. (We go there the 24th, next week Wed)

Dr Canady said that he does surgeries on Tuesdays and all the dates in April are full. So they e-mailed 'OR' and asked if they could have the 'OR' for 3-5 hrs on a Wed in April so they could squeeze Khloe in. (They said that they would call us 2 days before surgery and we would have to go right up there for pre-op and get ready) They called today and said that when all the doctors got together to talk about all the upcoming surgeries, they talked about Khloe, and they decided that they need to have the whole Cleft team there when she has her surgery and a Cardiologist on hand due to all of Khloes medical problems. The whole team and the Cardiologist can't be there on Weds, so that scratched that out. So, right now, surgery is set for May 11th. We have to be up there Monday, May 10th at 1:30 for Pre-Op. They said we should be done about 4pm. Then we will need to be back at the hospital at 6am the next day for surgery. They only allow 1 parent to stay in the hospital room over night. Lenny said that he will just get a hotel room for that night for himself. We have to have one for the night before anyway as coming home and then turning around early the next day would not be fun.

I have to tell you about God and how he works, even in the small parts of our life! Lenny and I have been sleeping on an air mattress for the past 3 wks. With the runing around with the pregnancy of Khloe and then how busy we were after her birth, Lenny never had the time to get up on the roof to clean out the gutters. Needless to say, with all the snow/rain, the gutters plugged up and ran right into the basement into our room. Our nice plush carpet was ruined! Lenny has taken all the wet carpet out and threw away but we still have some to tear out. Under the carpet is cement floor. BRR!!! So until we can get new carpet and get the whole room clean of that icky smell, we cannot stay down there. We are waiting on income tax to come back to help us out. Well, anyway, Lenny decided we should go to Iowa City on Sunday night so we wouldn't have to get up so early and maybe sleep in an actual bed. :) We found a Sheraton hotel down from the hospital. Lenny went in and asked how much the room was. They told him $130 a night. (I know that doesn't sound like much, but right now, it is a lot for us. ) Lenny said, Well, I was hoping not to spend that much, so thank you but no thanks. The clerk said, Sir, I have a suite that I can give you for $69. Lenny turned around and said, We will take it! You should have seen the room. We were on the 8th floor with a california king bed with down filled comforter and tons of pillows and a huge 32" screen tv. (I don't think we ever turned it onthough) It had a huge bathroom that was gorgeous! The view out the window was great and we took a nice but cold walk outside to see all that they had. Do you know how nice it was to sleep on a bed that night!!! It was AMAZING!!! God was with us and helped us get a great room and helped us with the price. The Sheraton also told us that they will give anyone $30 off a room each night when we have to go back for surgery. We just have to show them a paper saying that we are in Iowa City for that. Lenny went ahead and made reservations for May 10 for him, Khloe and I; and then for him for May 11th. We even got to go swimming and go in the hot tub for a while. It was nice!

I will post again once we get a date set for the BEAR test and afer we go to the ENT.

God has blessed us with a wonderful doctor. We really liked Dr Franks, but God knew what he was doing when he gave us Dr Canady. We will miss going to Mercy as it is soo much smaller and we could go see some of our favorite nurses, but we will still be there every so often and will hopefully go see them.

Thank you ALL for your words of encouragement and for signing the guest book. It is soo nice to know that you are all going through this journey with us. We are not alone and you are all there with us. THANK YOU!!!!! We LOVE hearing from you all and enjoy any input.

I want to also say thank you to Duncan's mommy. Duncan is 5 days older than Khloe and he just had his cleft lip surgery 3 wks ago. They live in a different state but it is so nice to exchange words with her and see what Duncan is going through and it gives us peace. Duncan is a sweet little boy and he looks GREAT!!!

We are still praying for Tirzah, our cousins daughter. They are in Italy and Tirzah has a small cleft lip. They are to meet with surgeons soon. Please keep them in your prayers.

Well.... change in plans. But EVERYTHING HAPPENS FOR A REASON!

We got a letter in the mail last week Tuesday stating that Dr Franks (Khloe's cleft lip/palate doc) has decided to close his practice as of Feb 21. I called them Wed morning to see what we needed to do. We had her surgery set for Thursday, March 18th. Mary Jo, Dr Franks nurse, said that there is only 1 other doc in Iowa that does this kind of surgery, Dr Canady, and he is in Iowa City. She said that her and Dr Franks will be having a conference call with the doctor during the week and will get things all set up for us. She said that they are doing everything by priority but that she would call us the week of Feb 1 and let us know what is going on. They called this morning and said that we have an appointment in Iowa City, Monday, Feb 15th at 9am. Mary Jo said that she is close to the top because of her age. They do not want us to introduce foods before surgery as she will need to go without foods/bottle for 2 weeks after surgery. So they want to get going on surgery before she gets too much older.

Dr Young's office, ENT, called last week Wed and said that since we cannot do both surgeries at the same time anymore, that they would like to do their surgery on Feb 8th at Mercy. They will put tubes in and see if they can repair anything that is damaged and causing her hearing loss. We have to be at Mercy at 6am on Monday. We are anxious to see if they can help her hearing at all.

She had her follow-up appointment with her heart doc last week Friday. They did an EKG and chest x-rays which is the normal routine. The doc came in and said that he needed to do an ultrasound on her heart right away as the x-rays show an enlarged heart. We took her right into the ultrasound room. Thee doc came back in later and said that her thymus is enlarged and not her heart. The thymus is a gland that is in front of the heart,he said. He asked us to tell her doc when we go see him on Monday. We went to see Dr Frost on Monday for her 4 month well-child check-up and a pre-op. We told him about it and he did blood work and chest x-ray to see what, if anything, was going on. They called today and said all is fine. Yeah!

Khloe also went for a check-up at Methodist for her hearing aids on Friday. She got a newer upgraded hearing aid that just came in. They were talking to us about the BEAR test that will need to be repeated soon but will wait til at least after her tubes are in and maybe wait til after her cleft is repaired. They said that they used to put some meds in the babies bottles to have them go to sleep. Well, the new anesthesiologist that just started, will not do it that way as he has not worked with it before and doesn't feel comfortable. So they were telling us that Khloe will be put under regular anesthetic during her BEAR testing this time. Lenny was a bit worried about her going under for her ears, then for the BEAR test and then for her lip. That will be all in a 1-2 month period.

We got a letter in the mail today from "Job's Daughter Hike' AKA 'The HIKE Fund, Inc'. They held a fundraiser in Khloes name and they said they had raised enough money to pay for Khloes hearing aids. PTL!!!!! They want to have a presentation for us to receive the check which will go right to Blank Childrens Hospital. They asked us if they could have media and newspaper there for the event. We are not sure on the date yet. We are so thankful for this organization! They will pay for future molds for her ears, check-ups and any other items that are needed for her hearing aids, as well. We were shocked to hear that they held a fundraiser in her name. God is GOOD!!

We will update on Monday again after surgery to let you know if they could help her with her hearing. Lenny or I will be updating Facebook and Twitter (Sassmangang)during surgery. Please pray that they will be able to help her, if even just a little bit with her hearing.

To let everyone know, our Cousin, had their little girl, Tirzah last week. She is amazing! Her cleft lip is only on one side and it doesn't even affect her nose. It goes about 1/2 way up on the one side. I do not think it even affected her gums. She DOES NOT have a cleft palate. She is beautiful!!!! My understanding is that they will come back to the states for her surgery, but possibly only 1 surgery for her. Yet another miracle!!

We will post more on Monday!!!! Thank you!!!!!!

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.