Ups and downs....

Well first the GREAT news.......the OT said Selah is on the brink of making cooing noises like a baby.... she also said Selah understands that the OT is there to work with her and shows it in her body language that she doesn't like that!   She pulls away from her as soon as the OT starts talking to her!!   So that means she is not responding just from pain but from the anticipation of pain!!!  It means she is thinking!!!!!    Also yesterday she moved JUST one arm at a time! That is a big deal!!!!!"  She has a long way to go, she is not constant with her responses and there are big gaps in what she should be doing but every week we see some improvement.  Please keep praying for her

Just today we had a friend and an unknown writer to the blog send us the same article about Fish Oil and how it can help brain injuries!  We are taking the article  to the hospital tomorrow and have some hope,


http://www.cnn.com/2012/10/19/health/fish-oil-brain-injuries/index.html?hpt=us_c2&fb_source=message

This afternoon we took the kids to the Strong's Museum again.  They had a great time

We got news from Lakeland Regional Medical Center.  They refused to take Selah as a patient.  Their reason this time was that there was the possibility of her getting sicker and may need to be transferred because they don't have the specialists for her care.  The doctors and staff here at Strong's in Rochester are "amazed" with the problems we have had in getting her into a hospital in Florida!   Strong's Hospital  sees her as "disabled" but "stable"   Last week I spoke to an administrator at LRMC who first said that Selah was too sick for LRMC since she was on a vent.  I stopped her and told her that Selah hadn't been on a vent for weeks, and asked if she had truly reviewed Selah's records.  Then she told me that since Selah wasn't on a vent, just a trach that she should just go to a nursing home.  As you can imagine, the conversation went downhill from there!!

This Monday I called the CEO's office and said I wanted them to reconsider her as a patient since I didn't not believe or really understand what I was told the previous week by the administrator who couldn't tell if she was too sick or not sick enough for her to go to LRMC!  So they had a meeting today and came up with this reason...that she could get sicker and have to be transferred.....REALLY? 

The team here had felt that the medical staff of LRMC was very open to Selah coming to them, but then it seemed administratively , things changed.....  I know for a fact that LRMC take kids on trachs and g-tubes...

LRMC has been a good hospital for our family.  Sam was born there and has been hospitalized there probably at least 10 times.  There were a couple of times when he was too ill or unstable for him to stay there and had to be transferred out.  I understand that LRMC is not a hospital where they have many different pediatric specialists.  We certainly wouldn't have asked for Selah to have been transferred immediately following the accident but it's been 10 weeks..... However, Selah is stable enough that IF we lived in NY, Strong's would have already transitioned us to home and Jon and I would be taking care of her.  Somehow I think LRMC is a little more qualified than we are!  The reason we have to have her transferred to a hospital in Florida is that she will be air transported to Florida and we have to make sure that she stays stable following the trip.  Also WE need her to be in a hospital situation for 2-3 weeks as we get our home ready for her and nursing care set up.  Plus you factor in the fact we've been away from home for 10 weeks now and will need to do alot of things to get back to normal.  We wanted her to be in LRMC for many reasons, we know the doctors and nursing staff, the hospital is very clean and secure, it's only 20 minutes from our home, close to family and friends who can visit and/of watch our kids while we are with Selah...but nothing seemed to matter.  LRMC does not seem like a very "hospitable hospital"  to us right now.  I would have thought that they would have wanted to help our family out but that does not seem to be the case.  I am very disappointed in them. 

I actually looked at a pediatric nursing home about 2 hours away from us, they don't have an opening nor are they set up for patients that would only be there for a few weeks, they are a long term facility.  Then I began researching pediatric nursing homes in Florida and found that the Department of Justice (DOJ) is investigating all of the pediatric nursing homes in Florida for several reasons and the main one, is that families say their children go into the nursing homes and then the nursing homes will not let them go home!  The nursing homes get so much money for the children and don't want them to go home!  So nursing homes are NOT something we are planning to do!

So the team here is looking at a Tampa hospital  for Selah.  It will be much harder for us to visit her on a daily basis.  We want the best for our child, which is to get her home but we need somewhere for her to go before that can happen.  Please pray that this situation will be worked out.  Also when we get home, we have to make decisions about what we are going to do about our home.  We can move the boys out of their room into the living room for the short term but we will either have to add to our home or move.  We may look at buying/building a home since we live in the church's parsonage which is not our personal home.  So putting thousands of dollars into it to change things for her might not be the best idea.  We've thought of several things but right now we just need to get home, set things up for the short term, then we can get her home! 

So roller coaster day....but honestly we are so encouraged by Selah's responses and progress that nothing else matters. 

Ronald McDonald Volunteer House Banquet

Shad calling out the prize numbers.  He is cool looking or what?   Who has that much confidence at NINE years old LOLOLOL~!~
 

 

 

This picture is Jon and I sharing with the volunteers how much we appreciate the Rochester RMH on the behalf of our family and all other families who stay here!!!  We had the BEST time tonight.  This banquet was to honor the volunteers who had worked on the Annual Thrift Sale for RMH~500 volunteers who work year long to make the sale possible.  This year they made over $330,00 for the upkeep of the RMH!  What sweet people!  So many came up to us and talked with us afterwards.  We are just so overwhelmed with all the volunteer workers that help out here.  It is amazing what is done here, the volunteers do so much stuff.  We've stayed at a few different RMH over the years and there is NO  RMH like Rochester RMH!!!  

This morning I got up early and spent the whole day with Selah.  She had a great day, got to spend an hour with therapist.  She gave me some great ideas and she was so encouraging to us.  She notes everything that Selah does and encourages us on all the progress she makes.  she was VERY responsive today and that was really encouraging to me.  I needed that.   She did have a time when her heart rate went up for a few hours.  She didn't have as high of a heart rate as she usually does & her blood pressure didn't go up too high but it did last for a few hours.   She is starting to wear a "nose" on her trach.  It is a covers her trach and works like a nose to filter air.  It will help us not to have to use the humiderfer all the time once we get home with her.  We are so blessed by the nursing staff here, they work with her trying to do everything they can to help her.  The last few weeks we've had student nurses and they have been wonderful too.  They seem to really care about the patients & the families also. 

We are waiting to hear on our next step with Selah, please keep us in prayer and as always pray for Selah!

Radio Interview

Today Jon and I did a radio interview for the Ronald McD House's annual telethon in the spring.  We have never done a radio show before, it was interesting.  The man who interviewed us was a believer and had a story also...don't we all?  Life is hard and every one's story is different but we all have or will have a story.  He experienced the grace of God through his journey also.  We could relate to the pain and we could also relate to the peace of God that carries us through!

This Wednesday makes NINE weeks since the accident....we are still praying for our Selah.  we ask you to continue to pray for her also.  Our life has not gone back to "normal"  We are still in the same situation, still in the same room, still with a little girl in the hospital...she is better but not the same little girl that we had 9 weeks and 1 day ago...

Today the nurse did say that she saw Selah respond to her also, when she was wanted to get out of the chair.  That was a great uplift to us!  We have some GREAT nurses!!!!  I'm so impressed by the nursing staff here at Strong's.  Of course no one wants to be in the hospital but if you do, this is a good place to be!

We had a crazy day today, everything got out of whack, woke up late, the water was off here for some repairs, then the interview, so Jon went over and stayed with Selah this afternoon.   I went and got Sarah's haircut and mine too.  Sarah looks like a little Amish girl:)  We have some Amish staying at the RMH and I think they think we are converting:)  By the time we got back it was time to feed the kids supper and give baths, eyedrops and do teeth brushing!  I didn't get to go to the hospital today so I'll get up early in the morning and go stay with Selah.  We have to have one parent here with the kids so it makes things a bit more complicated. My good friend who was watching the kids has gone back to work:(   So we spilt up our time with the kids.  We try and keep things as "normal" as possible with the other kids and keep them on the same schedule as we would at home.

The weather has been crazy here!  It has been super cold, in the 20's a few nights and then today it's warm and up in the 70's I had packed away all our summer clothes, of course LOL!    We had hoped for snow:)  The boys were really hoping we'd get some before we leave but I don't know if we will.

Well goodnight all and thanks for the prayers for our baby girl!

Waiting.....

We're just waiting on word on our next step.... still don't know all the details but hoping that things will work out for Selah to go to Lakeland Regional.   LRMC will be having a multi disciplinary meeting on Friday to discuss her coming to them.  Please pray that everything will be worked out for her.  So many changes will be coming for out family soon.  Being home will be a huge change for us after these past almost 10 weeks up here. 

Selah seems to be more resting today although she paid attention to Jon this morning as he sang and talked to her.  This afternoon she is just sleepy.  She seems to be on a plateau as far as doing anything new and of course that worries me alot.  Please pray that she is able to cough/gag and start moving her limbs.   She was so sleepy with me, it just worries me!  Please pray!!!!!!

There is alot rolling around in my head today, none of it too spiritual to be sure.  Feeling down and rather alone in this fight for Selah.  We want to see her get the best care, in a setting that we are comfortable with.   No one will fight for your child but yourself but that gets hard.  It's just a shame that things come with such a fight!!

Thinking that Friday will be 10 weeks since we left home....thankful that God has been with us during this time and that our family has been held in the palm of His hands.  When I look back, it amazes me that our family has made it through.  We are living in a small bedroom/bath in the RMH, our kids have just "rolled with the punches" we're making it work for us.  Someone asked if we were homesick...I anaswered "Nope, my family is with me, I don't miss a house!"   We've tried our best to keep things as normal as possible for them and thankfully it's working.  But it is difficult to go through such a valley, in a place that is not home.  We've been blessed by so many folks in the Rochester area to make us feel "at home"  So with every difficulty, we've been blessed.....but it's been a hard walk. 

So please pray for Selah and for us ...thank you!!!!

Clanton Family and Selah video (thanks Sarah)

Sunday update

Selah was more quiet today but she did enjoy her mouth swabs and she licked it every time!  The nurse saw it and was amazed that she could move her tongue like that.  The nurse was encouraging!  One good thing is Selah has not "stormed" for two days!  Her heart rate didn't go crazy when I got her up and worked with her.  She was more tolerating of me moving her arms and legs and her arms were very easy to move.  Her legs and ankles were less rigid than they have been so that is a good thing also.  Please continue to pray for her!  We treasure every little positive thing! 

Please pray for a member of our church, she just found out she has a non cancerous tumor in her stomach.  She is a sweet women & has served God for many years faithfully.

Thank you for all your prayers!!!

Update on a cold and rainy night....

Jon was with Selah today and I was doing 5 loads of laundry....we wanted to ask the nurse to do a gag/cough test on her to see if she'd respond.  The nurse did it and she didn't cough or gag but she clearly didn't like it.  We were disappointed that she didn't respond to it by coughing or gagging.  But she did respond to Jon today in the same way as she had been doing. She again seemed to banter back and to with him.  Today she seemed like she wanted to get out of our car seat and back in bed.  We use her car seat instead of the "therapy chair" it is much more comfortable and has a better head rest.  But she got tired of it and Jon could tell once she was back in bed she was happier. 

We went out to eat with some great friends tonight then we went over to the hospital.  Selah did two new things for me.  When we got there it looked like her mouth was dry so I wiped it out with some lemon flavored swabs, she LICKED the swab with her tongue, several times!!!!!!!!!   We were laughing at her:)  She really responded to it!!!!!!  Then as we were leaving for the night she STRETCHED!!!!!!  Now that might not seem much to someone else but it was a different , more relaxed movement than what posturing is!  Also her arms/hands were relaxed and not clenched, as well as her ankles/feet.  Her knees were really stiff but overall she felt better than usual.  This new movement was so different than posturing.....it looked just like when a newborn stretches....

So I'm sharing each new thing with you all but I'm being honest.  I wish she had the cough/gag response.  I think the doctors would be happier with everything if she did that since it is a basic response that she should have.  Please pray that she will get her cough/gag response back.  That would be a great thing!!!!!!  Thank you all for your prayers!!!!!