Selah continues to do good. We are so thankful for this medicine, it has made such a difference. Her heart rate is back to normal, which tells us she is recovering. I love seeing heart rates in the 60's and 70's all day long. She is back to sleeping all night peacefully! We are so very very thankful we were able to get the medicine on Friday (THANKS again Bill's Pharmacy of Brandon!) If she hadn't gotten it, she'd be in the hospital by now, on Thursday night, Friday she was going downhill. This made such a change in her!!!
Great service today, love seeing my kids involved. Our oldest son does the the sound/media now and he does such a good job. Kids nowadays just figure things out so easily! It's good to see him involved and liking what he does. After service we took flags out to the grave yard on the church grounds and put flags out for each veteran, we have 7 in our small cemetery. Several were vets from WWI! The others from WWII.... their families must all be dead, no one ever comes out but I was glad, that they were not forgotten today.
We have a mystery going on here..... we've been noticing little things here and there.... a few weeks ago, we found the church's water hose uncoiled and pulled all the way to the back of the church and left on! That was odd! We thought someone used it and then heard us and didn't have time to put it up. Then this week, one of our cat food trays went missing. Today the other one is gone...the trays were big and aluminum so they could be used for cooking. We are sure no animal took them as we have two fences, one big one put up by the Water Management company that runs the back of the property and then our yard is also fenced in around our house. We have a big outside dog also...I can't believe someone could come up without her barking but maybe she is used to this person. Anyhow it is strange. Tomorrow my fearless husband and brother in law are going out in the woods to check on things, see if they can find a camp. I'm tempted to put out some food....I looked at my garden but didn't notice anything missing from it but it would be hard to tell as I have so much in it! It's probably some old homeless guy.
We're not really worried. I mean we lived in the inner city of NYC with the homeless out on our street but it is a little unnerving. We have so many people at our house daily, with the nurses and therapists as well as night nurses. On the weekend, alot of time some of our family stay over with us too so we're not worried. Plus let's just say we have plenty of defense if we did need it....please don't ever try and "scare" us, in fact CALL before you come because if we don't expect someone....we ( I mean I) have been known to react swiftly....LOL
Thanks for all the prayers for Selah:) Sam also seems to be fine now. Every so often he will rub his eye some but he doesn't act like it is too painful. It looks awful inside, we've seen him open it a few times...UGH! Poor baby!
Hope all my American friends have a great Memorial Day tomorrow, enjoying friends and family. We thank the veterans who fought to give us this wonderful country that we live in! We are planning on some friends and family coming over for a cookout. This will be our first "party" since everything happened....Glad that we will have some of our closest peeps with us! I hope to take some pictures tomorrow:)
"Our life maybe a crazy life but it's our life" I'm married to a pastor of a small rural church, who is also the prison chaplain. We have 5 kids, each with their unique story. I love gardening & we all love the outdoors. Our life is not the way we planned it to be, but we are learning to trust God in every area. Come and read about our life as we live it to the fullest!
Sunday, May 26, 2013
Saturday, May 25, 2013
It's working!!!!
After the craziness of yesterday I have great news! The medicine is working and we can already tell a difference in Selah! Thank God! The reason this inhaled antibiotic works so well and so fast is that it is literally thousands of times stronger than a liquid med and it is given through the trach which is where it is needed:) She had a great night, a great day and evening. We are all very happy:) It's feels like a huge burden has rolled off my shoulders, worrying about her for the past 8 weeks, not having anyone listen to me, not being able to get her well....and now we have a doctor who listens and can take care of it. Our pediatrician could only take us so far but thankfully he sent us to the right specialist who is able to do the rest!!!! My heart is grateful!
Today was "fun Friday family day" Shad started calling it that and we love it. We went to Orlando to the Bass Pro Shop. It was crowded and overwhelming but Shad got a real child's size cross bow. He is very happy with it. He had gotten Steve's bow & arrow and is quite good with it. This one has about 30 pounds on the string so he has to work it, it has a sight too. We had been promising him one, but we just didn't have time to go over and get it till now. I think it was well worth the wait.
I STILL haven't taken any pictures of the gang since their haircuts but here are a couple from today....
Henry the cat, in the collards this morning.
Today was "fun Friday family day" Shad started calling it that and we love it. We went to Orlando to the Bass Pro Shop. It was crowded and overwhelming but Shad got a real child's size cross bow. He is very happy with it. He had gotten Steve's bow & arrow and is quite good with it. This one has about 30 pounds on the string so he has to work it, it has a sight too. We had been promising him one, but we just didn't have time to go over and get it till now. I think it was well worth the wait.
I STILL haven't taken any pictures of the gang since their haircuts but here are a couple from today....
Henry the cat, in the collards this morning.
Shad and a gator at Bass Pro Shop
You can see Shad has no hair LOL
One things we are really trying to do with the boys is to help them stay away from electronics (says the Mother as she is on her laptop) But we just see how hard it is for them to balance electronics and we are committed to giving them alternatives. Yearly we buy a membership to the State parks and we've bought kayaks for them to go on the river with their dad. We are encouraging archery too as that is a very skilled sport. We also shoot guns and target practice, believe it or not, I am a really good shooter. No one can believe it as I am half blind myself LOL. Actually my husband and I had a quick "date" at the shooting range tonight:) Betcha this surprised some of you! I grew up around guns and hunting so it's common to me. I don't hunt, my husband did when he was younger and our oldest wants to start hunting....I'm not against hunting....my thing is you have to skin, cook and eat anything you bring home. My family supplemented our meat supply by hunting. I didn't skin anything!!!! And I'm too old to start! I can barely pull the plastic bag out of the turkey's butt at Thanksgiving without gagging! You know I'm not about to skin something!
But the "battle of the electronics" is the biggest one we fight in our home. With the electronics (tv, computer, video games, phones) come attitudes we do not like. I say we brought this upon ourselves and some of it we did actually buy, some things were given to our boys over the years.... We believe in BALANCE and do not want to be parents who say no to everything, but on the other hand, electronics take the place of real relationships and we see that so clearly in the younger (and even our) generation. Hopefully we can keep the balance by keeping them outside and busy. During our time in NY after the accident, the electronics WON as we were at the hospital so much, the boys were with the little ones at the Ronald McD House and things were so stressful. Now we are back to fighting that monster! But the monster can be tamed, there is a place for electronics, we just have to keep it in its place!
Thank you for praying for Selah, please continue!!!!!
Friday, May 24, 2013
CRAZY DAY!!!
Good Lord, if yesterday was a quiet day today was a crazy day.....
It started great, got up early, met a friend for a quick breakfast, then rushed back home to pick up Selah, her nurse and Steve. I'm having very bad neck/shoulder spasms and tightnessagain so I needed Steve to help get Selah in and out of the van. It's so hard to move her into and out of the van and to put the thousand pound (small exaggeration) wheelchair in to the van.
We had the BEST appointment with the pulmologist! She was just amazing! She totally got everything and understood the situation. We have a PLAN to get Selah well, and to maintain her! And if she does get sick enough to go to the hospital we also have a plan for that! Thank God!
So the plan is to add the Tobramycin which is an inhaled antibiotic to her meds. She will be on it for 28 days and then off for 28 days and then back on. The liquid antibiotic was increased due to Miss Selah now weighing 48 pounds...and the doctor could go up on the med. So our plan is to see if this will work for her.
Selah is still "off" not well, so hopefully that will work, if not, then the doctor will put Selah in the hospital (not St Joe's but Tampa General) and have a PIC line put in for IV antibiotics and then we can take her home on that and flush out her system.
So either way we are covered and I really liked the energy and how the whole office worked together and were focused on Selah. I'm so glad our pediatrician sent us there, it was a good call and I really think this will put Selah on the road to recovery AND progress! She can't be weaned off the trach until she is well enough to pass all the testing. This doctor feels coming off the trach will be the best thing for her but we have to get her to the point she can do it!
THEN the CRAZINESS began........we got home, and get a phone call from our pharmacy saying that we have to go through a mail order pharmacy for the med. Honestly I was on the phone from 2pm till 7pm arranging for her medicine. WELCOME to Obamacare....it is ugly! During all of this I was interviewing a new nurse to take our day nurse's position AND I get told that our family insurance just denied nursing care for Selah. Since she has medicaid as a secondary, she'll still get the 24 hour nursing and I've already started the appeal to our insurance and feel confident that she will be reinstated. Our private insurance has never denied anything until Selah's accident and this is the 2nd time we've had something major denied. We won the last appeal and I'm sure we will this time too. The reason we want our insurance to pay is to be honest it pays more than medicaid and of course nursing staff would rather have the private pay than medicaid!
So all this is going on, I'm trying to get in touch with the doctor ....at times I had phones in both ears, and the nurse was on a phone.... it's Friday afternoon and a long weekend in coming. We were desperate! I find out the kind of Tobramycin that was ordered costs $6000 !!!!!!!! Can you believe that??????? So the pharmacy was forced to make us order from the mail order pharmacy BUT the quickest we could get it for her was Monday or Tuesday..... So the doctor changed the prescription to the same med but the ONLY difference is we have to draw the med up in a syringe and put it the inhaler ourselves rather than it being pre measured out..... that brought the price down to our co pay of $7...... a $5993 difference!!!!!!!!!! CAN YOU BELIEVE THAT??????? (I actually didnt' even pay at the pharmacy, he said he'd straighten it out on Tuesday and between the two insurances, we probably won't owe anything- we didn't last time but even if we owe a co pay....that is nothing compared to the other med!)
BUT no one had the cheap medicine.....EXCEPT for one wonderful pharmacy in Brandon...an hour drive away....and they closed at 7:30 pm....the doctor found them for us at 7pm.....we drove down there and they stayed opened till 7:45 pm JUST for us!!!!! THANK YOU BILL'S PHARMACY OF BRANDON ON HWY 60 EAST!!!!!!!! If you live near that area, give them your business! What a great group of folks and they were happy to do that for us and so very gracious!!!!
So......what a crazy day.... but I am thankful at the end of the day, Selah has the medicine that hopefully can clear her out completely and get her well. So many people helped us today (and a few were not too helpful) Driving home with the precious medicine on my lap, looking at the beautiful sunset reflected on the high clouds, like only Florida has....I had a very thankful heart...might have had to repent for a couple of things I said today(I keep it real) ....but I was thankful that God worked all this out for Selah today. I'm not too worried about the nursing appeal, I'm sure that will work out too.
WHEW! I feel like I've been racing all day long....thanks for your prayers, despite all the difficulties of today, I do think this will be the change Selah needs to keep her trach clear! This will make a big difference for her. She did not have a good night last night, she didn't fall asleep till 5am but no storming but her heart rate fluctuated up and down....that is not a good sign for her. I feel she is "on the fence" and could go either way. I think this new medicine and going up on a higher dose on the oral antibiotic will push her over the fence to the WELL side:) I certainly hope so!!! It has certainly been a team effort to try and do something to get her well and keep her out of going to the hospital every two weeks!! Thanks to everyone who helped!
I know I was going to cook and try out some crock pot recipes....well that didn't happen! We ate tonight thanks to Sonnys BBQ :) I was also going to post some pics of the new hair cuts...ummm that didn't happen either....but here is one cute picture of Steve and Sam tonight in the van on our road trip for the medicine....
It started great, got up early, met a friend for a quick breakfast, then rushed back home to pick up Selah, her nurse and Steve. I'm having very bad neck/shoulder spasms and tightnessagain so I needed Steve to help get Selah in and out of the van. It's so hard to move her into and out of the van and to put the thousand pound (small exaggeration) wheelchair in to the van.
We had the BEST appointment with the pulmologist! She was just amazing! She totally got everything and understood the situation. We have a PLAN to get Selah well, and to maintain her! And if she does get sick enough to go to the hospital we also have a plan for that! Thank God!
So the plan is to add the Tobramycin which is an inhaled antibiotic to her meds. She will be on it for 28 days and then off for 28 days and then back on. The liquid antibiotic was increased due to Miss Selah now weighing 48 pounds...and the doctor could go up on the med. So our plan is to see if this will work for her.
Selah is still "off" not well, so hopefully that will work, if not, then the doctor will put Selah in the hospital (not St Joe's but Tampa General) and have a PIC line put in for IV antibiotics and then we can take her home on that and flush out her system.
So either way we are covered and I really liked the energy and how the whole office worked together and were focused on Selah. I'm so glad our pediatrician sent us there, it was a good call and I really think this will put Selah on the road to recovery AND progress! She can't be weaned off the trach until she is well enough to pass all the testing. This doctor feels coming off the trach will be the best thing for her but we have to get her to the point she can do it!
THEN the CRAZINESS began........we got home, and get a phone call from our pharmacy saying that we have to go through a mail order pharmacy for the med. Honestly I was on the phone from 2pm till 7pm arranging for her medicine. WELCOME to Obamacare....it is ugly! During all of this I was interviewing a new nurse to take our day nurse's position AND I get told that our family insurance just denied nursing care for Selah. Since she has medicaid as a secondary, she'll still get the 24 hour nursing and I've already started the appeal to our insurance and feel confident that she will be reinstated. Our private insurance has never denied anything until Selah's accident and this is the 2nd time we've had something major denied. We won the last appeal and I'm sure we will this time too. The reason we want our insurance to pay is to be honest it pays more than medicaid and of course nursing staff would rather have the private pay than medicaid!
So all this is going on, I'm trying to get in touch with the doctor ....at times I had phones in both ears, and the nurse was on a phone.... it's Friday afternoon and a long weekend in coming. We were desperate! I find out the kind of Tobramycin that was ordered costs $6000 !!!!!!!! Can you believe that??????? So the pharmacy was forced to make us order from the mail order pharmacy BUT the quickest we could get it for her was Monday or Tuesday..... So the doctor changed the prescription to the same med but the ONLY difference is we have to draw the med up in a syringe and put it the inhaler ourselves rather than it being pre measured out..... that brought the price down to our co pay of $7...... a $5993 difference!!!!!!!!!! CAN YOU BELIEVE THAT??????? (I actually didnt' even pay at the pharmacy, he said he'd straighten it out on Tuesday and between the two insurances, we probably won't owe anything- we didn't last time but even if we owe a co pay....that is nothing compared to the other med!)
BUT no one had the cheap medicine.....EXCEPT for one wonderful pharmacy in Brandon...an hour drive away....and they closed at 7:30 pm....the doctor found them for us at 7pm.....we drove down there and they stayed opened till 7:45 pm JUST for us!!!!! THANK YOU BILL'S PHARMACY OF BRANDON ON HWY 60 EAST!!!!!!!! If you live near that area, give them your business! What a great group of folks and they were happy to do that for us and so very gracious!!!!
So......what a crazy day.... but I am thankful at the end of the day, Selah has the medicine that hopefully can clear her out completely and get her well. So many people helped us today (and a few were not too helpful) Driving home with the precious medicine on my lap, looking at the beautiful sunset reflected on the high clouds, like only Florida has....I had a very thankful heart...might have had to repent for a couple of things I said today(I keep it real) ....but I was thankful that God worked all this out for Selah today. I'm not too worried about the nursing appeal, I'm sure that will work out too.
WHEW! I feel like I've been racing all day long....thanks for your prayers, despite all the difficulties of today, I do think this will be the change Selah needs to keep her trach clear! This will make a big difference for her. She did not have a good night last night, she didn't fall asleep till 5am but no storming but her heart rate fluctuated up and down....that is not a good sign for her. I feel she is "on the fence" and could go either way. I think this new medicine and going up on a higher dose on the oral antibiotic will push her over the fence to the WELL side:) I certainly hope so!!! It has certainly been a team effort to try and do something to get her well and keep her out of going to the hospital every two weeks!! Thanks to everyone who helped!
I know I was going to cook and try out some crock pot recipes....well that didn't happen! We ate tonight thanks to Sonnys BBQ :) I was also going to post some pics of the new hair cuts...ummm that didn't happen either....but here is one cute picture of Steve and Sam tonight in the van on our road trip for the medicine....
$200 came in today for our orphan fund! So we are at $810 for this month, with only $190 to go to meet the goal of $1000!!!!!! Please see the sidebar at the top of the blog that tells about our Orphan Ministry and how to give. This month it is for the little girl we had hoped to go back for but now a friend is adopting her and two other children! We are so blessed to be able to give towards this!
Please keep Selah in prayer!
Thursday, May 23, 2013
Quiet Day
This has been a quiet day, Selah is doing fine, but she is still "off". her heart rate went up this afternoon but she didn't storm. Our nurse worked with her and he sat her up in bed and she calmed down. She got some extra PT today which was good for her. Tomorrow we see the Pulmologist and hopefully really get a good plan of action for her, in order to keep her out of the hospital for good!!!! I really hope this will be a good appointment and not a waste of time. If you have a special needs child, you know what I mean, MOST appointments with specialists are a waste of time and money. Honestly I've always felt our pediatrician could handle all of that for us so much better. I do know our peds office has been in contact with the pulmologist's office and I think that will help everyone to focus on what we need for Selah. And what we need is something, whether it is long term antibiotics or whatever to keep her out of the hospital and home where she belongs!
Steve had a dentist appointment to tighten his braces and it's right across the road from the mall.... And there is still a sale going on at Macy's...and I still had a coupon....and there were two more skorts that came home with me!!!!!!! Yes I have an addiction....the only time of year I can feed it is in the spring when the skorts come out. You see, there are only a few skorts made, and then they are all sold and by July, you won't be able to find one in a store...unless you get lucky and find one at a thrift store. So last year, I was too busy with buying things for the girls to buy myself any skorts....this year, I've made up for it! LOL but with the sale and coupons, they were only $13 each today!
This afternoon, I went through my closet yet again. I really believe when you buy something new, you need to get rid of something. So I tried on things, ironed things, folded & reorganized and put things in bags to give away. BTW, I like to iron....how werid is that?? Most of my clothes I buy at a thrift store, so it is not hard to part with something bought for $2 or so! I have "my style" the kind of clothes I feel comfy in and of course, SKORTS top the list! I love when I can find something at a thrift store that is "my style" and still looks nice. I'll only buy brand new or name brand things at a thrift store. I love having my closet really cleaned out. Everything is ironed and put together.....it just does my OCD self GOOD to have something in my life organized! I gave some things to our nurse who is working with his church and taking things to the tornado victims in Oklahoma.
Also today I got to go to the Nutrition S'Mart a health food/grocery store. They carry the BEST hummus in the world and it has NO oils in it. (we stay away from vegetable oils unless they are Expeller Pressed) I bought a few days supply LOL they also had a sale on chips..."healthy" chips....LOL we get this one type of chips made with Olive Oil and rosemary that we call "marijuana" chips because they are so addicting! Those chips with a Pepsi....HEAVEN HAHAHAHAHA! Forget the Pepsi....trying to be healthy is hard!
Shad has been finished with his 3rd grade work now for a week:) He finished up 3 weeks before our school lets out so I'm proud of him (and myself!) Steve will be working through the summer finishing up 11th grade and doing his Russian class. ( I told him to take Spanish but no....he had to go and pick a language that has its own alphabet! ) Actually I'm proud he is taking Russian. It's because he went to Ukraine and learned so much of the culture and of Russia too. Ukraine does have its own language but in our area, only Russian was spoken except in court, that was all in Ukraine. Our family feels a strong bond and love for Ukraine.
So a quiet day, everything is ok but I'm still worried about Selah. I'd like to be seeing her getting better quicker, I think in my gut I'm afraid we'll end up in the hospital still. Please continue praying for her and that our appointment tomorrow will give us some real solutions to this problem of getting sick every two weeks or so.
Please do not forget about our orphan of the month, we have raised $610 so far....I'd love to hit $1000 for her this month!!! That would go a long way in her adoption!!!
Thank you all for your prayers, giving and sweet comments to me. You really encourage me more than you know!!!
Steve had a dentist appointment to tighten his braces and it's right across the road from the mall.... And there is still a sale going on at Macy's...and I still had a coupon....and there were two more skorts that came home with me!!!!!!! Yes I have an addiction....the only time of year I can feed it is in the spring when the skorts come out. You see, there are only a few skorts made, and then they are all sold and by July, you won't be able to find one in a store...unless you get lucky and find one at a thrift store. So last year, I was too busy with buying things for the girls to buy myself any skorts....this year, I've made up for it! LOL but with the sale and coupons, they were only $13 each today!
This afternoon, I went through my closet yet again. I really believe when you buy something new, you need to get rid of something. So I tried on things, ironed things, folded & reorganized and put things in bags to give away. BTW, I like to iron....how werid is that?? Most of my clothes I buy at a thrift store, so it is not hard to part with something bought for $2 or so! I have "my style" the kind of clothes I feel comfy in and of course, SKORTS top the list! I love when I can find something at a thrift store that is "my style" and still looks nice. I'll only buy brand new or name brand things at a thrift store. I love having my closet really cleaned out. Everything is ironed and put together.....it just does my OCD self GOOD to have something in my life organized! I gave some things to our nurse who is working with his church and taking things to the tornado victims in Oklahoma.
Also today I got to go to the Nutrition S'Mart a health food/grocery store. They carry the BEST hummus in the world and it has NO oils in it. (we stay away from vegetable oils unless they are Expeller Pressed) I bought a few days supply LOL they also had a sale on chips..."healthy" chips....LOL we get this one type of chips made with Olive Oil and rosemary that we call "marijuana" chips because they are so addicting! Those chips with a Pepsi....HEAVEN HAHAHAHAHA! Forget the Pepsi....trying to be healthy is hard!
Shad has been finished with his 3rd grade work now for a week:) He finished up 3 weeks before our school lets out so I'm proud of him (and myself!) Steve will be working through the summer finishing up 11th grade and doing his Russian class. ( I told him to take Spanish but no....he had to go and pick a language that has its own alphabet! ) Actually I'm proud he is taking Russian. It's because he went to Ukraine and learned so much of the culture and of Russia too. Ukraine does have its own language but in our area, only Russian was spoken except in court, that was all in Ukraine. Our family feels a strong bond and love for Ukraine.
So a quiet day, everything is ok but I'm still worried about Selah. I'd like to be seeing her getting better quicker, I think in my gut I'm afraid we'll end up in the hospital still. Please continue praying for her and that our appointment tomorrow will give us some real solutions to this problem of getting sick every two weeks or so.
Please do not forget about our orphan of the month, we have raised $610 so far....I'd love to hit $1000 for her this month!!! That would go a long way in her adoption!!!
Thank you all for your prayers, giving and sweet comments to me. You really encourage me more than you know!!!
Wednesday, May 22, 2013
Mall trip
Selah is doing ok, her heart rate is up just a bit overall BUT not storming. I bought her a probiotical for her to start taking in case it is just her tummy feeling bad with all the meds going in. No fever or throwing up and no storming so things are ok I'd just like to see her feeling better after being on medicine since Friday!
This afternoon I took the kids to get their haircut and go to the mall, fun times:) Sam loves getting his hair cut but if we touched his face near his bad eye, he'd flinch so it still must be painful. Steve got a really nice hair cut and his beard trimmed, now he won't frighten small children! Shad got everything shaved just like Sam and Sarah and I just got a trim. I'll do some pictures but the little ones are taking naps.
Then I found three pairs of SKORTS HALLELUJAH! And I ordered two other pairs that they didn't have in my size (they were too big whoohoo!) We all have our addictions.....but at least my addiction was on sale 50% and I had a coupon for another 20% and got free shipping:) If you don't know what a "skort" is...it is a skirt with attached shorts. It is the most comfortable and modest shorts/skirt you can find. Living in Florida, you tend to live in shorts. Skorts can be dressy or you can wear tennis shoes and a tshirt with them.... I love Skorts, with having kids, it's nice to know I'm not flashing anyone when I bend over LOL These were really good thick material and a little longer which is nice. I'm HAPPY:) I also got a badly needed pedicure and a 20 minute massage today....I feel very indulged! Hey maybe it was me that won the lottery LOL!
Last night I put on a crock pot full of chicken legs and boneless breasts to cook all night. This morning I had the broth to take off and save and now the chicken is baking with bbq sauce! Also got baked beans, green beans and mac & cheese cooking. That was so easy, meals around here have been hit or miss for the most part lately. I hate that, I'm used to cooking supper every night....I've got to get back on track! Some days I just don't focus good anymore.
When I had to wait at CVS Pharmacy for hours on Monday, I found a cookbook called "Fix It and Forget It" and it has all kinds of crock pot recipes. I'm trying several out tomorrow. For Christmas I got a 3 pot crock pot. It is long and has 3 crock pots that are side by side in the machine. My goal is to use it a couple of times a week. I also have a giant crock pot, a medium/Large one and a small one. I have NO excuse for not using them all the time. There were so many recipes in that book to try out so we are going to do so. Tomorrow night I am going to cook a wild chicken rice, seafood dip, and a Mexican beef/bean dip all in the crock pots. I do have to modify the recipes a bit to try and fit our healthier goals but it should be good. I'll let you know and share the recipe if it all turns out good. One thing I learned from that book was you could put in a completely frozen chicken or parts of chicken and let it cook all night on low and it will thaw and then cook....that was life changing LOL!
Thank you for your prayers for Selah and our family. Thank you for your kind support, I love the emails and comments I get that are so encouraging!!! Thanks!
This afternoon I took the kids to get their haircut and go to the mall, fun times:) Sam loves getting his hair cut but if we touched his face near his bad eye, he'd flinch so it still must be painful. Steve got a really nice hair cut and his beard trimmed, now he won't frighten small children! Shad got everything shaved just like Sam and Sarah and I just got a trim. I'll do some pictures but the little ones are taking naps.
Then I found three pairs of SKORTS HALLELUJAH! And I ordered two other pairs that they didn't have in my size (they were too big whoohoo!) We all have our addictions.....but at least my addiction was on sale 50% and I had a coupon for another 20% and got free shipping:) If you don't know what a "skort" is...it is a skirt with attached shorts. It is the most comfortable and modest shorts/skirt you can find. Living in Florida, you tend to live in shorts. Skorts can be dressy or you can wear tennis shoes and a tshirt with them.... I love Skorts, with having kids, it's nice to know I'm not flashing anyone when I bend over LOL These were really good thick material and a little longer which is nice. I'm HAPPY:) I also got a badly needed pedicure and a 20 minute massage today....I feel very indulged! Hey maybe it was me that won the lottery LOL!
Last night I put on a crock pot full of chicken legs and boneless breasts to cook all night. This morning I had the broth to take off and save and now the chicken is baking with bbq sauce! Also got baked beans, green beans and mac & cheese cooking. That was so easy, meals around here have been hit or miss for the most part lately. I hate that, I'm used to cooking supper every night....I've got to get back on track! Some days I just don't focus good anymore.
When I had to wait at CVS Pharmacy for hours on Monday, I found a cookbook called "Fix It and Forget It" and it has all kinds of crock pot recipes. I'm trying several out tomorrow. For Christmas I got a 3 pot crock pot. It is long and has 3 crock pots that are side by side in the machine. My goal is to use it a couple of times a week. I also have a giant crock pot, a medium/Large one and a small one. I have NO excuse for not using them all the time. There were so many recipes in that book to try out so we are going to do so. Tomorrow night I am going to cook a wild chicken rice, seafood dip, and a Mexican beef/bean dip all in the crock pots. I do have to modify the recipes a bit to try and fit our healthier goals but it should be good. I'll let you know and share the recipe if it all turns out good. One thing I learned from that book was you could put in a completely frozen chicken or parts of chicken and let it cook all night on low and it will thaw and then cook....that was life changing LOL!
Thank you for your prayers for Selah and our family. Thank you for your kind support, I love the emails and comments I get that are so encouraging!!! Thanks!
Tuesday, May 21, 2013
Tuesday update
Thanks so much for the sweet positive comments on here and emails I've gotten! You guys are great!!!! You get me all fired up! I don't need any of you hanging out with me at the hospital, we'd all get kicked out hahahaha!!! Thank you!
My heart is so heavy for the tragedy in Oklahoma....it's hard to grasp it.... Actually there is so much going on in the world in general and in my world (of my friends and family) heartaches, sicknesses, deaths....it seems like a time of great need. Just today there were so many needs among my friends, older parents sick and dying, siblings very sick, accidents, several families in the process of adoption have heard the child they were going for, has passed away or is very sick...one child just home 3 weeks passed away from her health issues.... so many sad hearts in this world.....the only thing I can think is that "God is near to the brokenhearted" and this world with all its heartache is NOT our home, we are just passing through....thank God this is not IT for the christian...we have an eternal Hope!
Today I took Selah to her neurologist's appointment. He sees Sam and is a very common sense doctor. He really just talked to us about things, nothing new, no med changes. He did really look at her eyes and feels there maybe some optic nerve damage but wants confirmation from an opthmologist, not that that really makes a big difference in anything we do with Selah. We talked about who Selah was before the accident and how that has to be taken into account. He seemed shocked at how delayed she was before hand.... It was sad in one sense...I felt he held back from being discouraging. He did say we may still see improvement but that the longer time goes on with no major improvement, the less chance of it happening. We've been told that many times so it's ok. We realize that if improvement doesn't happen significantly in the first few weeks....then there is little chance the child will be back to her "normal" self ever. Brain injury from a near drowning or loss of oxygen is the worst kind of brain injury. I have had people tell me about someone they know who had a car accident or whatever and had a brain injury and how they astonished the doctors...etc.... That does happen in some cases like that because the whole brain is not injured. With lack of oxygen the WHOLE brain is injured and it makes full recovery much more difficult. It's still sad to hear....and to tell the story again... I almost broke down, but I caught myself in time. I really hate to cry!
She hasn't stormed for over 24 hours now! The new med may be working!!! Our main day nurse gave notice today, she is taking a job at a facility nearer her home and less hours and more benefits.:( She is going to help me interview someone to take her place. It will be hard to replace her!
Next month I am going to my 30th year high school reunion....yes 30th! I have to say I am really excited:) I went to the 10th and it was not anything much to write home about....I missed the 20th altogether, I think we were going to Branson Missouri around the same time...but now thanks to Facebook, I've reconnected with old friends and feel much closer to many of them than I ever did in school! I think we have all gone through LIFE and are much more realer people than when we were in high school (at least I hope so LOL) I was not a "popular girl" I came from a a strange family situation (for my era, in a small town) and on top of that, we went to a Pentecostal church! We were poor but most everyone in town was pretty poor. It's funny, now I look back at folks I thought were "rich" and realize they weren't! No one had alot back then. People used to make fun of my glasses and freckles or that I wasn't allowed to wear pants for awhile... To me it's just funny now.
Growing up in a very small town, we were all pretty much together from kindergarten to 12th grade. You kinda knew everyone... so everyone has some kind of history with each other. We all have the same memories, same teachers, same elementary, junior high school and high school.... I left for college after I graduated and only went back a few summers so I really haven't had much contact with most of my classmates. I do have a BFF from my childhood, who I will always be close to and I get to spend a whole long weekend with her!!!! WOOHOO!!!!!!!! We haven't had more than a meal together in almost 10 years! We've stopped and met her for lunch or dinner when we've driven through Perry but that has been it! Thank God for telephones and emails! Growing up we were inseparable...in other words, I lived at her house:) Her parents put up with me and nurtured me. I loved being over at the Harris house....it was fun and full of love and laughter. We laughed alot...if you'd ever had told me back then we would see so little of each other as adults, it would have killed me! When you have a friend from your childhood, they really "get you" They knew you as a child, a teen, they knew the silly you and your family too. They often knew the dreams you had for the future.... It's really special to have a long time friend like I do and I am so thankful for Angela! I can't wait to spend time with her!!!! We've been close friends for 35 years and friends since childhood.
I'm looking forward to seeing others too. I think when you've lived half your life ( most of us will turn 48 this year) and gone through LIFE....it's kind of a survivor's meeting LOL... Who'd the heck ever thought we'd get this old??? Not me! What is weird, since I haven't seen many of my classmates, they are forever 17 years old in my mind....then I see them in pictures on FB and I think..."well they are not quite 17 anymore LOL" What unnerves me the most is seeing guys I had crushes on who have GRAY hair!!!!!!!!! (although I have to say I didn't hae that many crushes on guys in my grade! Ewwww Gross! LOL) But the grey hair is the oddest thing to me, it doesn't seem possible! That is what makes me feel old:)
It's going to be a good girls weekend:) Lots of laughs I'm sure!!! It gives me something to look forward to:) How much weight can I lose in a month??????
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So please keep praying for Selah.....sometimes I get more focused on the day to day, like getting her through this illness but I do pray daily for God to heal her and bring her all the way back to us!
My heart is so heavy for the tragedy in Oklahoma....it's hard to grasp it.... Actually there is so much going on in the world in general and in my world (of my friends and family) heartaches, sicknesses, deaths....it seems like a time of great need. Just today there were so many needs among my friends, older parents sick and dying, siblings very sick, accidents, several families in the process of adoption have heard the child they were going for, has passed away or is very sick...one child just home 3 weeks passed away from her health issues.... so many sad hearts in this world.....the only thing I can think is that "God is near to the brokenhearted" and this world with all its heartache is NOT our home, we are just passing through....thank God this is not IT for the christian...we have an eternal Hope!
Today I took Selah to her neurologist's appointment. He sees Sam and is a very common sense doctor. He really just talked to us about things, nothing new, no med changes. He did really look at her eyes and feels there maybe some optic nerve damage but wants confirmation from an opthmologist, not that that really makes a big difference in anything we do with Selah. We talked about who Selah was before the accident and how that has to be taken into account. He seemed shocked at how delayed she was before hand.... It was sad in one sense...I felt he held back from being discouraging. He did say we may still see improvement but that the longer time goes on with no major improvement, the less chance of it happening. We've been told that many times so it's ok. We realize that if improvement doesn't happen significantly in the first few weeks....then there is little chance the child will be back to her "normal" self ever. Brain injury from a near drowning or loss of oxygen is the worst kind of brain injury. I have had people tell me about someone they know who had a car accident or whatever and had a brain injury and how they astonished the doctors...etc.... That does happen in some cases like that because the whole brain is not injured. With lack of oxygen the WHOLE brain is injured and it makes full recovery much more difficult. It's still sad to hear....and to tell the story again... I almost broke down, but I caught myself in time. I really hate to cry!
She hasn't stormed for over 24 hours now! The new med may be working!!! Our main day nurse gave notice today, she is taking a job at a facility nearer her home and less hours and more benefits.:( She is going to help me interview someone to take her place. It will be hard to replace her!
Next month I am going to my 30th year high school reunion....yes 30th! I have to say I am really excited:) I went to the 10th and it was not anything much to write home about....I missed the 20th altogether, I think we were going to Branson Missouri around the same time...but now thanks to Facebook, I've reconnected with old friends and feel much closer to many of them than I ever did in school! I think we have all gone through LIFE and are much more realer people than when we were in high school (at least I hope so LOL) I was not a "popular girl" I came from a a strange family situation (for my era, in a small town) and on top of that, we went to a Pentecostal church! We were poor but most everyone in town was pretty poor. It's funny, now I look back at folks I thought were "rich" and realize they weren't! No one had alot back then. People used to make fun of my glasses and freckles or that I wasn't allowed to wear pants for awhile... To me it's just funny now.
Growing up in a very small town, we were all pretty much together from kindergarten to 12th grade. You kinda knew everyone... so everyone has some kind of history with each other. We all have the same memories, same teachers, same elementary, junior high school and high school.... I left for college after I graduated and only went back a few summers so I really haven't had much contact with most of my classmates. I do have a BFF from my childhood, who I will always be close to and I get to spend a whole long weekend with her!!!! WOOHOO!!!!!!!! We haven't had more than a meal together in almost 10 years! We've stopped and met her for lunch or dinner when we've driven through Perry but that has been it! Thank God for telephones and emails! Growing up we were inseparable...in other words, I lived at her house:) Her parents put up with me and nurtured me. I loved being over at the Harris house....it was fun and full of love and laughter. We laughed alot...if you'd ever had told me back then we would see so little of each other as adults, it would have killed me! When you have a friend from your childhood, they really "get you" They knew you as a child, a teen, they knew the silly you and your family too. They often knew the dreams you had for the future.... It's really special to have a long time friend like I do and I am so thankful for Angela! I can't wait to spend time with her!!!! We've been close friends for 35 years and friends since childhood.
I'm looking forward to seeing others too. I think when you've lived half your life ( most of us will turn 48 this year) and gone through LIFE....it's kind of a survivor's meeting LOL... Who'd the heck ever thought we'd get this old??? Not me! What is weird, since I haven't seen many of my classmates, they are forever 17 years old in my mind....then I see them in pictures on FB and I think..."well they are not quite 17 anymore LOL" What unnerves me the most is seeing guys I had crushes on who have GRAY hair!!!!!!!!! (although I have to say I didn't hae that many crushes on guys in my grade! Ewwww Gross! LOL) But the grey hair is the oddest thing to me, it doesn't seem possible! That is what makes me feel old:)
It's going to be a good girls weekend:) Lots of laughs I'm sure!!! It gives me something to look forward to:) How much weight can I lose in a month??????
-----------------------------------------------------------------------------------------------------------------------
So please keep praying for Selah.....sometimes I get more focused on the day to day, like getting her through this illness but I do pray daily for God to heal her and bring her all the way back to us!
Monday, May 20, 2013
Beyond Frustrated!
The best laid plans of mice and men.....
Well I had plans for today but they all got shelved....
Checked with our pediatrician and Selah grew THREE bugs out of of trach sample. Soooooo.....as I was on my way to the dealership to get some stuff done on my van, I turned around.....
He wanted her to be on Cipro or she had to go to the hospital for an IV. Since we had gone through it with Cipro already, I talked to the pharmacist about it and he actually called the manufacturer and found out that Cipro can't be given through a gtube because it does not interact with the body correctly that way. Evidently it needs to work all the way through the digestive system to be effective. So our doctor put her on another drug, it's new and our pharmacy didn't have it.....but one 25 miles away did. So I drove through a storm to get it. I called the nurse and Selah was having her own "storm" UGH!
We are hoping this medicine will work and clean her out. I am frustrated.....if you remember JUST TWO weeks ago, she was released from St Joe's...the doctor basically did it against my wishes. Since that was her THIRD admission in just six weeks, and each time she tested positive for the same stinking thing....I did NOT think just a little amoxicillin was going to keep her healthy....so now only one week after finishing the bottle, she is sick for the FOURTH time since the first of April. To say I'm ticked off would be an understatement!!!!! I can assure you, there are quite a few adjectives that are in my mind as I am typing this that are not wholesome.....nor am I adding them....
I'm MAD because there is such a lack of COMMON SENSE in the medical community.....I saw this with Sam when he was little and I knew I'd see it with Selah. In my opinion it is worse in the South (in Florida) than up North. I could be wrong but having experienced health care in NY with Sam and Selah....I can at least say in our situation that has been what we have seen.
IF the doctors had listened to me when Selah was admitted the SECOND time for the same thing...maybe this would have cleared up. Maybe if they'd listened to me at the THIRD admission for the same thing, maybe this would have been cleared up....but NO! They would not listen to me OR to Selah's regular nurses (each time they went with us when she was admitted) The doctors were too busy either trying to turn it into something more than an infection (in one case calling in both neuro and cardiology twice-because of the storming that happens when she is sick- and that has been documented) or in the other case acting like I was making a mountain out of a mole hill....
So common sense does not prevail and who suffers??? My little girl...not the doctors who made stupid decisions and wouldn't listen to me but this little girl and that is what makes me MAD!
So she has been sick since Thursday night, it keeps her from progressing, she feels bad and she has neurological storms and has to take more meds to keep her calm. Now if this new antibiotic doesn't work, then she will be admitted once again. I can assure you THIS time someone will listen to me. Selah HATES the hospital and she regresses just being in there! She stiffens up, she gets jumpy and has many more storms.
I've thought about IF she has to go in taking her to All Children's but then we are further from home and having to start all over again. To be honest, Sam was in there several times and each time something happened to him that was NOT good! So it is not really where I want to go with her and they have residents and interns which just annoy me to no end.... There is a hospital in Orlando called Neumores but we tried to get them to take Selah so we could transfer her down here from NY and ALL they wanted to talk to me about on a conference call was their "nursing homes for children" As you can imagine I told them quite bluntly they were wasting my time and their time.... It was not a pleasant conversation. So I have no big hope for them either.
I'm sure I sound like a WITCH and will probably get a few emails telling me how nasty I am.... well I can promise you, you ain't seen nothing till you see me fighting for my child. I am not ashamed of it, I know God has given me wisdom (but for some reason, absolutely NO Tact) and I go with my instincts. I am seldom wrong about things that I feel in my gut. I've known since Selah's first admission with this crud that she needed something strong to get rid of it. I should have pushed harder this last time but I didn't. As it was, they had a social worker talk to me about their "discharge plans" I believe they did it to try and intimidate me which did not work. They did not threaten me in any way, but there was the feeling that I was a "problem mom" who thought I knew more than the doctor. Which I did.... We did want her home and felt she was more upset being in the hospital and hoped that if she got sick again we could manage it at home.
It's not like I'm home with her alone, we have 24 hour nursing, two different shifts a day so medical professionals are taking care of her and they could tell if she started to take a turn for the worse. Plus they are only working with Selah and they know her, they know her normals and what is not normal. But amazing no one wants to listen to them either!
We have a good pediatrician but once she is admitted, he is out of the picture until she is released. That is how it goes..... If we can keep her out of the hospital, she has an appointment on Friday with a pulmonogist. Our pediatrician wanted her to see him so maybe she can be put on a long term antibiotic so we can get her well, then work her off the trach and hopefully be done with it! Alot of kids get infections in their trachs no matter how clean things are kept, it is an opening in the body that doesn't have any natural defenses. So maybe that will be the answer for her.
So I am beyond frustrated! It would be easy for me to just put her in the hospital and let them deal with all the ups and downs of her being sick. We can't be there all the time, so I wouldn't have the minute to minute worry about her. Heck it gives us a "break" BUT it is not about us! We want to do what is best for her and she just freaks out in the hospital plus being in the hospital puts you at risk for so many more germs!
What should have happened at her last admission - the THIRD one for the same thing- was she should have been placed on IV antibiotics and sent home. I already had cleared it with the home health agency, it could have been done. Then the antibiotic would have been strong enough to totally clear out her system. The first doctor she had agreed with me, but then before the process could be started, a new doctor rotated in and called in several specialists (for no NEW reason) and once she was cleared by them....(for cardiac and neurology) he felt she was fine and should go home WITHOUT the IV antibiotics. He said amoxicillen would be enough....yeah right....
So this time IF she does end up having to go to the hospital....I can assure you she won't come home till she either has a full course of IV antibiotics OR they send her home on it......
Ok enough of my ranting....sorry this is just beyond frustrating to me! Just be glad you can click off my blog LOL!!!!
Please pray this new medicine will kill all three bugs and help her to recover!!!!!!
And for the ones of you who thought I was some spiritual giant....you may have changed your mind after this blog! Sorry but I hate when I have to deal with foolishness, when it has to do with my child! Maybe I don't handle it the right way and probably do not handle my anger very well either .... But I can tell you I love my little ones, and will see that they get the best care possible!
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While I was hanging out in CVS for hours..... I did find a toy for Sarah. Sarah is not a big toy player but I thought she might like this and she did very much! She definelty can see light! I love she actually starts holding it, that is big for her!
Well I had plans for today but they all got shelved....
Checked with our pediatrician and Selah grew THREE bugs out of of trach sample. Soooooo.....as I was on my way to the dealership to get some stuff done on my van, I turned around.....
He wanted her to be on Cipro or she had to go to the hospital for an IV. Since we had gone through it with Cipro already, I talked to the pharmacist about it and he actually called the manufacturer and found out that Cipro can't be given through a gtube because it does not interact with the body correctly that way. Evidently it needs to work all the way through the digestive system to be effective. So our doctor put her on another drug, it's new and our pharmacy didn't have it.....but one 25 miles away did. So I drove through a storm to get it. I called the nurse and Selah was having her own "storm" UGH!
We are hoping this medicine will work and clean her out. I am frustrated.....if you remember JUST TWO weeks ago, she was released from St Joe's...the doctor basically did it against my wishes. Since that was her THIRD admission in just six weeks, and each time she tested positive for the same stinking thing....I did NOT think just a little amoxicillin was going to keep her healthy....so now only one week after finishing the bottle, she is sick for the FOURTH time since the first of April. To say I'm ticked off would be an understatement!!!!! I can assure you, there are quite a few adjectives that are in my mind as I am typing this that are not wholesome.....nor am I adding them....
I'm MAD because there is such a lack of COMMON SENSE in the medical community.....I saw this with Sam when he was little and I knew I'd see it with Selah. In my opinion it is worse in the South (in Florida) than up North. I could be wrong but having experienced health care in NY with Sam and Selah....I can at least say in our situation that has been what we have seen.
IF the doctors had listened to me when Selah was admitted the SECOND time for the same thing...maybe this would have cleared up. Maybe if they'd listened to me at the THIRD admission for the same thing, maybe this would have been cleared up....but NO! They would not listen to me OR to Selah's regular nurses (each time they went with us when she was admitted) The doctors were too busy either trying to turn it into something more than an infection (in one case calling in both neuro and cardiology twice-because of the storming that happens when she is sick- and that has been documented) or in the other case acting like I was making a mountain out of a mole hill....
So common sense does not prevail and who suffers??? My little girl...not the doctors who made stupid decisions and wouldn't listen to me but this little girl and that is what makes me MAD!
So she has been sick since Thursday night, it keeps her from progressing, she feels bad and she has neurological storms and has to take more meds to keep her calm. Now if this new antibiotic doesn't work, then she will be admitted once again. I can assure you THIS time someone will listen to me. Selah HATES the hospital and she regresses just being in there! She stiffens up, she gets jumpy and has many more storms.
I've thought about IF she has to go in taking her to All Children's but then we are further from home and having to start all over again. To be honest, Sam was in there several times and each time something happened to him that was NOT good! So it is not really where I want to go with her and they have residents and interns which just annoy me to no end.... There is a hospital in Orlando called Neumores but we tried to get them to take Selah so we could transfer her down here from NY and ALL they wanted to talk to me about on a conference call was their "nursing homes for children" As you can imagine I told them quite bluntly they were wasting my time and their time.... It was not a pleasant conversation. So I have no big hope for them either.
I'm sure I sound like a WITCH and will probably get a few emails telling me how nasty I am.... well I can promise you, you ain't seen nothing till you see me fighting for my child. I am not ashamed of it, I know God has given me wisdom (but for some reason, absolutely NO Tact) and I go with my instincts. I am seldom wrong about things that I feel in my gut. I've known since Selah's first admission with this crud that she needed something strong to get rid of it. I should have pushed harder this last time but I didn't. As it was, they had a social worker talk to me about their "discharge plans" I believe they did it to try and intimidate me which did not work. They did not threaten me in any way, but there was the feeling that I was a "problem mom" who thought I knew more than the doctor. Which I did.... We did want her home and felt she was more upset being in the hospital and hoped that if she got sick again we could manage it at home.
It's not like I'm home with her alone, we have 24 hour nursing, two different shifts a day so medical professionals are taking care of her and they could tell if she started to take a turn for the worse. Plus they are only working with Selah and they know her, they know her normals and what is not normal. But amazing no one wants to listen to them either!
We have a good pediatrician but once she is admitted, he is out of the picture until she is released. That is how it goes..... If we can keep her out of the hospital, she has an appointment on Friday with a pulmonogist. Our pediatrician wanted her to see him so maybe she can be put on a long term antibiotic so we can get her well, then work her off the trach and hopefully be done with it! Alot of kids get infections in their trachs no matter how clean things are kept, it is an opening in the body that doesn't have any natural defenses. So maybe that will be the answer for her.
So I am beyond frustrated! It would be easy for me to just put her in the hospital and let them deal with all the ups and downs of her being sick. We can't be there all the time, so I wouldn't have the minute to minute worry about her. Heck it gives us a "break" BUT it is not about us! We want to do what is best for her and she just freaks out in the hospital plus being in the hospital puts you at risk for so many more germs!
What should have happened at her last admission - the THIRD one for the same thing- was she should have been placed on IV antibiotics and sent home. I already had cleared it with the home health agency, it could have been done. Then the antibiotic would have been strong enough to totally clear out her system. The first doctor she had agreed with me, but then before the process could be started, a new doctor rotated in and called in several specialists (for no NEW reason) and once she was cleared by them....(for cardiac and neurology) he felt she was fine and should go home WITHOUT the IV antibiotics. He said amoxicillen would be enough....yeah right....
So this time IF she does end up having to go to the hospital....I can assure you she won't come home till she either has a full course of IV antibiotics OR they send her home on it......
Ok enough of my ranting....sorry this is just beyond frustrating to me! Just be glad you can click off my blog LOL!!!!
Please pray this new medicine will kill all three bugs and help her to recover!!!!!!
And for the ones of you who thought I was some spiritual giant....you may have changed your mind after this blog! Sorry but I hate when I have to deal with foolishness, when it has to do with my child! Maybe I don't handle it the right way and probably do not handle my anger very well either .... But I can tell you I love my little ones, and will see that they get the best care possible!
--------------------------------------------------------------------------------------------------------------------------
While I was hanging out in CVS for hours..... I did find a toy for Sarah. Sarah is not a big toy player but I thought she might like this and she did very much! She definelty can see light! I love she actually starts holding it, that is big for her!
for some reason, I have always loved Sarah's little hands, I noticed them on all her orphange pictures we saw and I still love her tiny little hands. I really love to see them holding a toy:)
what a sweet little girl she is, with a soft smile for everything.
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