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!!!!!!