WE ARE HOME!!!

Got home around 6:30 tonight, will post more when I get time :)

Going home on 'Wed!!!

The goal was to go home tomorrow but I wasn't comfortable taking Hannah home yet.  She started having a lot of seizures on Christmas day...I don't know if it is because we stopped one of her seizure meds over a week ago or not getting enough phenobarb.  I finally saw a neurologist late this afternoon and he is increasing her phenobarb dose.  There is a fine line with phenobarb and kidney function. So we will see how that goes, these aren't like her typical seizures, they are quick and its things like her eyelids fluttering fast.  She is going home on valium, just a small dose.
  Her kidney levels are going down, BUN is 53 (normal 7-20)  creatinine is 1.5 (normal 0.6-1.2)  that is the most important and they would like to see that down to 1.0.  So I suggested that we keep her central line in as long as we have to do extra bloodwork since she is a very hard stick.  We will have to change the dressing on it once a week and flush it daily.  Shouldn't be a big deal.   They did another renal ultrasound on her today and said it looked much better.  She is going home on lasix too.
  Her pancreatitis is much better, she has been tolerating her normal rate and amount of formula through her gtube since friday.  Hopefully tomorrow they will take out the G-J tube and measure her for a new "mini" button.
  She also had a spinal xray today for her appt in two weeks with ortho.  They have been pleased with her progress.
  They also put in a request for dental while we are here, pray they can do it tomorrow.  They dont accept hannah's dental plan here anymore but they think since she is inpatient it might be covered.  Pray that it is covered and they can do it tomorrow, otherwise I have to find another dentist to do her cleanings etc and that is going to be hard.  It  has been over a year since she has seen dental and for a child with cleft lip/palate that is important.
  It was my idea to wait til wed, we would have to be out of here by noon to get home for the nursing agency to be able to visit and admit her back into the agency without problems...nursing is such a pain but I am thankful I have it.  This way hopefully everything will be done tomorrow and we can leave early wed morning.
 It will be so nice to get home in my own bed and shower!  but I will miss having someone fix my dinner everynight and clean it up.

   We had a nice quiet Christmas here at the hospital.  Becky, Todd and Taylor were able to come for a few hours.  Taylor didn't even notice we were at the hospital instead of at home.  Santa came to see Hannah Christmas eve and brought her lots of presents.  I got a new small video camera for Christmas and was so busy with that didn't get any pics of taylor so I will have to get some from becky.

goal for going h**e is tuedsay!

I am afraid to say it too loud or let Hannah hear but if all goes well, Hannah may go h**e on tuesday. Praying that her nursing will be able to start back then.
  They are going to see if we can start her back on her regular gtube feedings.  Her pancreatitis is better.  She is a little anemic so she is starting taking some iron.  Her creatinine level is 1.9  (high normal is 1.2)  As long as things keep going down, that's good.  Still working on getting her sodium levels to stay up.  Phenobarb needs to be back at her home dose schedule and her antibiotic ends on Sunday. 
  Her spinal fusion incision still looks really good, only a bandage at the bottom where her diaper is.  He said we don't need to do anything special with moving her like we thought we would.
  Today we thought would be a good day to start wearing her regular gowns.  The antibiotic diarhea is better :)  so today she looks pretty in pink

dialysis catheter is out!!!

  the dialysis catheter is out!!!  look how long it was, ouch!

Hannah

Yesterday the  pediatrician said we are here for the holidays...I didn't like the "S" he put on the end.  I hope he just meant Christmas eve and day :)  Her kidneys are slowly getting better. Looks like a long slow process.  She hasn't needed dialysis since friday but they are still monitoring all of her levels.  Her BUN is still around the 60s and 70's (normal is 7-20)  Her creatinine is around 2.4 (normal is 0.6-1.2)  Her sodium is still low.  Her hemoglobin is low but not low enough for a transfusion.  Still on one IV antibiotic and Infectious disease are checking her cultures again.   Her lungs are staying clear and her O2 is good! Her heartrate is still high.  Pancreatitis levels are getting better.  Because of the kidney function they are constantly changing her feedings,  She is still on lasix and fluid restriction.  She has never been on diuretics before and we have never had to restrict her fluids, she normally gets tons of water.  They are hoping to take out the dialysis catheter later this week.  I am not sure what her levels should be to be safe enough to go home. 

Santa visits the kids here but Hannah didn't know what to tell them she wanted :)  Child life came around today and gave each of the kids a Christmas build a bear, she held on to it.  If I give her a stuffed animal she will hold on to it. 
  Just a quick note that we are on floor 2A  room 9.  Not in the PICU!  I am going home for the day tomorrow, getting a haircut, and need to wrap the few gifts I have bought.  Chuck is going to be here with Ms H to talk to the drs.

Sunday -low sodium levels

Hannah's sodium levels are staying very low...they keep giving her extra sodium but the level stays the same...her kidney #s are still about the same so probably no dialysis tomorrow. They did wean her off one of the diuretics today.  I laughed when I got back from dinner, this is what I found 

can you say attitude?  LOL

  this is her snugglie that i had my MIL make her

when she lays on the ladybug pillow pet she looks like she has antenas

rare pics of her smiling and laughing (I think they are seizures :( )

Hannah, maybe no more dialysis!

I am afraid to say this out loud, but the kidney dr was in and said this was probably Hannah's last dialysis treatment!!!!    Her urine output is way up and her levels are slowly going down but the urine output will help with that.  She said we will see how the weekend goes.  She is having a lot of seizures this afternoon but her phenobarb level is very low, it is dialyzed out.  They are giving it to her IV after dialysis instead of liquid.  they have also stopped her gabitril (a seizure med) to see how it goes..she gets 4 seizure meds and still has seizures.  they figured it was a good time while she was here watching her.  Although we watch her more a home than they can here :)  with that many meds it's hard to tell which are working which ones aren't.
Her pancreas levels are getting better too, they are changing her formula rate to get in a few more calories.  With Hannah there is a fine line between gaining and losing weight.  They are stopping the one antibiotic and the other one should be ending soon.
  Thanks for the continued prayers for us!  the nurses all comment on how calm I am and I told them it's because there are so many people praying for me too and I choose to be content while I am here. 
  I just realized that one week from today is Christmas Eve.  There is nothing like being in the hospital this close to Christmas to celebrate the real meaning of Christmas.  I have done a little shopping, I have finished for taylor (she is the most important one! :)  and most of Chuck's stocking stuffers but if nothing else gets bought I am not going to stress about it!
  the hardest part for us being here an extra week is that hannah's nurses aren't able to work for us...we miss them and I want to thank Mary for coming and sitting with Hannah so I could get out yesterday!

wed.

Hannah is doing better, no fever since last night, dialysis was good today, no problems and took off a lot of fluid. She is on two antibiotics now and they are changing her formula. She did start having seizures again today, the valium must have been helping :)  Haven't heard any blood levels,, they will probably do that tomorrow.

monday

Hannah had to have another blood transfusion today, they gave it to her during dialysis.  3 different dialysis machines broke today so they didn't get to finish.   They are checking her levels and if they are still high they will come back tomorrow to finish it but if they are ok, they will just wait til wed.  She gets dialysis Mon, Wed, & Fri. for 3 hours.  Her BUN and creatinine levels are still very high.
  She is still running a fever so they have cultured all her lines, her central line has 2 catheters and her dialysis line has 2 catheters too.  Not sure I am saying that just right.
I talked to her again today and told her she needs to stop throwing different things at us so we can go home.  It's been 2 weeks today and we have no idea how much longer
 This pic was enhanced by a friend of mine, I love it, you don't even see the blue spaceship gown :)  someone needs to design better looking gowns for kids.  the littler kids even boys wear purple ones.

Sunday

 this moning:  Even though Hannah is doing better and they are getting urine from her it is still not enough..the dr was just talking to me and it's her levels like her BUN and creatinine that are still high, about 10 times what it should be...she does look great though!

Hannah is running a temp of over 101...they changed antibiotics today, can't even pronounce the new one...infectious disease came in again :( not good...the UTI is clear but it's something weird in the trach culture...tons of secretions today but lungs still sound good through all of this.

Hannah saturday

I took this pic on friday when they finally took Hannah off the vent.  She was moved to the rehab unit Wed afternoon ( this is where we always are when she is in the hospital, all the trached and vented kids come here)  They finally got approval for her to get up in her chair too...we had to move the headrest up about 3 inches!  She looks good in her chair as you can see.
  She is still getting dialysis 3 days a week for 3 hours.  They are cathing her every 8 hours and are getting about 100 to 150cc each time.  That's much better but she still has a ways to go.  When we cath her nornally we get between 100 and 500cc depending on how wet her diapers are...she is not having any wet diapers right now.  the nurse said overnight she had a poopy diaper and wet and only got 50cc...not sure about that since she hasn't wet any other times.   The dialysis is not going well, her catheter is in her groin and is very positional, so if she just moves a little, it alarms.  The bms are getting in the edges of the dressing that holds the dialysis catheter in place.  She had been having blood pressure drops and seizures during the dialysis but friday that was better.  Her weight is slowly going down too.
  She started having large antibiotic diarhea yesterday, she is on a strong antibiotic for a UTI.

 She got a G/J tube yesterday.  It looks the same as her gtube, just has two ports on it.  Here is a good explanation of a G/J  tube on a blog that a mother wrote  G/J tube This will help give her tummy and pancreas a rest to heal.  They weaned her off the TPN today and she is up to a rate of 40cc an hour continuous on the Jtube.
 I asked the hospitalist pediatrician how long we will be here and she thinks it may be two weeks. I think it all depends on how she does each day.
  Sorry it too so long to update.  I had to run home two days in a row so my week has been really messed up.  I have been having trouble with a crown on a back tooth for a while, after Jonas was born I went to the dentist and she said it had slipped, so she put it back.  She also put a temp crown on another tooth on the bottom left.  wed, our old dentist (takes our dental insurance again) fit me in so he could look at the crown.  It hadn't slipped this time, there was a fracture in it and a very deep root had gone bad causing a very bad infection.  He finally ended up pulling that tooth but I couldn't  eat on that side for a couple days. I knew that as going to be  a problem.  The other dentist office called while I was getting my tooth pulled and left a message that the crown was in.  I called her right back to see if she could do it while I was that close but she had already left for the day :(  so that night, the temp crown came out and I had to run home again on thurs to get it..thankfully that is done and I am feeling a lot better.  Wed, Hannah's home nurse Mary came and sat with her while I was gone.  Thurs my sister in law Pam came to watch her but we got back here only about an hour after she did, I didn't want to be gone too long, it's too important for me to find out what the drs are saying right now.  I don't like leaving Hannah alone long in the hospital, but I don't think anyone else can understand how important that is unless they have had a child in the hospital before.  It's hard enough leaving her to go sleep at the r mcd house.  I usually get here about 8am leave for dinner at 5:30, come back and stay til about 9.  I like her to know someone is here.  she is rarely out of my sight even at home.
Here are some more pics from this week.

This one is before we move the headrest.  And a warning this next pic I took friday afternoon of he incision.  It looks really good.  I forgot to get one the first time he took it off. 

http://www.itsthoughtful.com/christmas-gift-contest/29914/ln/

http://www.itsthoughtful.com/christmas-gift-contest/29914/ln/  if I can get 15 people to sign up I get a $25 amazon gift card, do the same and you can get one too!  :)   I know someone who did and it works, great just in time for christmas gifts!

Hannah tuesday

Hannah is doing better.  When I got back from dinner last night they said she had 3.5cc of urine..yay!  during the night they got 6cc and today they got 11cc!!!  such a tiny amount but it's a good start.  She is off the continous dialysis and is on it for 3 hours a day right now.  She was only going to be get it Mon, Wed & Fri  but she was puffy this morning and her BUN and creatinine levels were still a little high, dialysis today was only 2 hours but they took off 700cc of fluid and her face isn't puffy anymore.
  She does have pancreatitis which is a common side effect of spinal fusion.  She is on TPN (total parental nutrition) right now, that gives her all of her nutrition through an IV to give her stomach and pancreas a break.  Hopefully tomorrow she is going to get a J tube instead of her usual G tube.  the J tube goes into her jejunum and bypasses her stomach.  This will make it easier to feed her and give her meds while she has the pancreatitis.
  She has been running a temp for a couple days, not good when you have so many lines going into your body.  They think it may be a UTI, she had a positive culture when she still had urine last week.  They cultured the tiny it they got this morning and it was still positive.  She is on an antibiotic for that.
  She is still on the vent, with a little oxygen, not sure why they haven't taken her off, I think that is the goal.  She has a vent at home but uses it mostly at night and sometimes during the day.
  She has started having seizures again, I think she was just having different seizures before, but a side affect of  dialysis is seizures, so you have to balance that out :)  today I haven't seen as any as I did yesterday.
  Aside from the kidneys she is actually doing well for spinal fusion.  We may be moving to the rehab floor in a couple days.  I just wish she could get out of bed, but with the dialysis catheter in,she can't.
  I have met so many nice people in the last week and it;s been nice to be able to talk to some of them for a while and share experiences.  I am thankful that hannah doesn't know what is going on and is comfortable where she is at the time.
 Tomorrow, wed, I have to go home and go to the dentist, I have a crown on y tooth that is slipping and has to be fixed.  It wouldn't be so bad if I didn't already have a temporary crown on the other side :)  so Hannah's home care nurse Mary is going to come and spend the day with her so she isn't alone, especially if she gets the J tube tomorrow.
 thanks so much for the continued prayers for us, we can feel the and I am at peace that we are where the Lord wants us to be right now.  Needless to say we are going to be here longer than the two weeks we had originally planned.
  If you would like send Hannah a card, the hospital has a free card service, they print them and bring them to her room.   ecards   She is in room 2717 right now.  Please make sure you add your name, we got some with out a name on them :)   thanks again and Hannah sends love and hugs to everyone!
 a pic from today, kinda dark and is anyone else getting tired of the same blue gown?  :)

Hannah update saturday

Hannah is still on dialysis, no urine yet, but they are going to try taking her off it for a while  (when her weight goes down some more) and see how she does. Her swelling is going down a lot and they are taking a lot of fluid off her with the dialysis. thanks so much for the continued prayers. If you want to call me you can private message me and I will give you the phone #
  She is still on pain meds and valium for seizures so she is still sleeping a lot, that's good because I would be afraid she would pull some of the wires and tubes out.  She had a really low rectal temp today so she is under a nice bair hug warming blanket.

Hannah update

surgeon was just in and changed Hannah's dressings on her back, everything looked really good. She is doing like she should 4 days out from surgery except for the dialysis, still no urine.

Hannah Thurs update

Hannah sedated and swollen from surgery

                                               peaceful but swollen

where the dialysis catheter goes into he groin

some of the lines going in her body

her dialysis circuit close up

with her Christmas snuggie mom mom made her

another view

the bags at the bottom

I waited for them to do rounds today before updating. Hannah is in acute renal failure, the renal dr thinks that something happened to her blood flow to stop her kidneys and she thinks they will eventually start working again, she has to stay on dialysis(and in the PICU) til she starts making her own urine, they are cathing her every 12 hours but still no urine.

Other than that she is doing like she should be 3 days post op from her spinal fusion. Most of her swelling is from that.

Hannah update

just realized I didn't get a chance to update here last night, facebook is so much easier to post quick updates, sorry.  so I am going to try to put the all here.
last night
so far Hannah's lungs are still clear, it's just the outside of her body that is puffy..the dr explained they don't do dialysis for cosmetics :) we need to continue to pray for her kidneys to start working again. This was a good article about kidney function http://www.medicinenet.com/kidney_failure/article.htm hey are going to start the dialysis tonight before she gets into crisis mode...her BUN and creatinine levels are higher now. they were starting dialysis when I left. Hannah is ok and so am I. this is from this morning
just got here, no big changes today :) she is on dialysis for now. I feel like I have to say Hannah is not dying her kidneys just decided to stop working for now. thanks so much for the continued prayers! I am really at peace with everything and know that she is getting the best care she can right now.

hannah kidneys shutting down!

Hannah was doing well when we left last night.  I got here about 9 this morning and was shocked at what I found...they were doing a renal ultrasound on her because her kidneys have shut down.  they can't find a reason why, they thought it might be a blood clot but it wasn't.  they think it's from the surgery but that never happens  they are shocked here too.  so far her lungs are clear but with the fluid overload, it's just a matter of time  the dr said she is just going to get sicker before she gets better...she may have to go on dialysis if it doesn't resolve it's self.
  she is also testing positive for MRSA  again so everyone has to put on gowns.

hannah kidneys shutting down!

Hannah was doing well when we left last night.  I got here about 9 this morning and was shocked at what I found...they were doing a renal ultrasound on her because her kidneys have shut down.  they can't find a reason why, they thought it might be a blood clot but it wasn't.  they think it's from the surgery but that never happens  they are shocked here too.  so far her lungs are clear but with the fluid overload, it's just a matter of time  the dr said she is just going to get sicker before she gets better...she may have to go on dialysis if it doesn't resolve it's self.
  she is also testing positive for MRSA  again so everyone has to put on gowns.

out of surgery!!!

Hannah is out of surgery...we saw her xrays and she was a lot worse than we realized. they said her pelvis was off the table when they finished :) we should be able to see her in less than an hour. She did well. He did say she had some kyphsis that barely moved before.  will post more later or tomorrow!

surgery update 3

Latest update...he is almost finished putting the screws in and will then put in the rods. he hopes to be done around 8pm. thanks for the continued prayers, i am still at peace about it all. My mom, becky, taylor and inlaws have been here most of the time. They have all gone now.

surgery update 2

the liason comes out every hour with an update..he just put in the first screw...at least he is done most of the incisions....it's going to be a long day, could last til 8pm! he said he may even have to do one stage and stop and go back in next week...depending on what he finds...anesthesia said she is doing well.

surgery update

at 8:30 this morning

they just took Hannah back for surgery, she has to get a lot of blood products first so it could be up to 2 hours til they can start, he said he likes to take his time so it could be as long as 8pm tonight before she is out. anesthesia said this is a life threatening surgery for her...she is in God's hands and He is in control...

 

and the dr just started the first inscision around 11:00

Becky's baby shower & Thanksgiving

Last Saturday, 11/20 I had a small baby shower for becky, she is going to have her second baby on 1/12/11.  this is going to be a little boy they are naming Logan.  Taylor is their oldest and she turned 2yo on 9/1.  There weren't many people here, family and one of her friends, thanks melissa for taking the pics.  I didn't have time to plan a big one with Hannah's surgery coming up and not knowing for sure when Jonas was going to be born.  It was a nice shower.
 Looking forward to my 3grandchild being born, I love being a grami.  It melts my heart when taylor says I love you grami!
  Jenn, Bob and Jonas came late Sunday night and didn't go home til today, I miss them already, we don't see them enough.  Jonas turned 3 weeks old yesterday and is so cute.  Taylor was really cute with him and calls him baby Jonas.  We were able to spend a lot of time this week with our girls, love that!  Both our girls families were here for dinner last night.
  We got to visit with chuck's parents on wed night, they loved meeting Jonas for the first time.  Thanksgiving day we ate at my mom's.  She is going to my nephew's wedding in FL on 12/12 and is going to stay through New Years.  we ate a little with J & b before they had to leave and then finished eating with my oldest brother Garry, his wife Pam and his ambulance partner.  It was a nice quiet day.  I haven't wanted to take Hannah a lot of places this week to keep her healthy for her surgery on monday!
  We decided to out our Christmas tree up last Sunday since this week would be too busy to do it,  I love having the decorations up early anyway.  The only problem was taylor was over a couple times and is obsessed  with undecorating everything  LOL

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pic of becky at her shower.

Hannah appts

Last  Friday we saw the pulmonologist.  He said he is on call the week of her surgery and to call him if anything is going on so he can admit her a day early if he needs too..good to know,  he also suggested increasing her VEST treatments to 3-4 times a day (he called it voodoo  LOL)
  I got to meet our fb friend Zeke and his mom Lori.  He was at dupont to be evaluated for surgery.  His condition is life threatening and worse than they thought.  Please pray they can get him in sooner for the surgery.  I didn't get pics of him and Hannah, he was still in the PICU :(  maybe when he comes for surgery I can get pics.  He is such a cutie!
  the bad part of the day was my van overheating.  It started getting cold about 1/2 hour after leaving home, chuck said I probably needed antifreeze.  I called my mom since I was on the way to pick her up and she had some antifreeze,  I put it in a just kinda watched the gauges but it seemed ok.  About 10 minutes after dropping mom back home, the check gauges light came on and I was overheating!  I had just looked at mom's and it seemed ok.  I called my brother david and he came and brought me water to put in it.  I made it home ok but it started getting cold again a couple blocks away.  Saturday chuck found a cracked hose and replaced it.  Sunday morning, it had leaked all over the driveway.   Todd, came over and looked at it after Church and something just needed to be tightened, so far today it's ok.  they do still need to replace the hoses but this should be ok since I have to take her back to dupont for her pre surgery work up on thurs!  She is also going to be measured for a mini button instead of the mic-key she is using now(that's her gtube, how she gets fed).
  It's getting to be really hectic, I can't believe her surgery is two weeks from today!  I am having a small baby shower for becky on saturday.  Pray that I can get everything done, I am having some problems with a crown on a back tooth and am hoping to get into the dentist on wed while chuck is here working and can keep an eye on Hannah.

Jonas Evan Boyer!

Jonas was born on friday Nov 5, 10!  Jenn's water broke at 3:33 am on the 3rd...we couldn't sleep so called my mom and made plans to leave.  Our friend Lori from church is a nurse and if it wasn't for her, we couldn't have both gone down there!  She came and worked after her overnight shift on tues night and again on friday, we thought chuck was going to have to come home thurs night, be with Hannah during the day and come back to Va fri night, 5 hours one way!  thankfully Lori's schedule got changed.  the other nurses filled in extra hours and becky did the weekend, of course she would have rather been with her sister and nephew!
Jenn's labor didn't progress like they wanted it to.  After 2 days, they finally had to do a c section :(   but jonas was born healthy and they are all doing good.   The nice thing was I got to spend a lot of time with Jenn and that's rare for us with them living so far away!

 Jonas weighed 8lb 5 oz and was 21.4 " long.  He has a lot of brown hair, surprising them since they both had light hair.  The pic was taken today, he is 10 days old.  I can't wait to see them this weekend, they are coming for Thanksgiving and Becky's shower.

Hematology appt- Von Willebrands Disease

We saw hematology on wed.  We discussed Hannah's Von Willebrands (VWD).  He said we are not using the DDAVP since they are sure that is what caused the drop in sodium and her seizure. 
  They are going to be giving her Von Willebrands factor as an IV as soon as she gets to the hospital the day of surgery and for at least a week after.  There is also a medicine called amicar that they will also start giving her before.   She has  had it before.
  they called yesterday and said her VWD levels were still the same, I was hoping different.  Her Vit K levels are low so they want us to start a special compound of Vit K.  Our pharmacy doesn't have it so they had to send it to Hills in Easton.  They need one ingredient to fill it so it won't be ready til Monday.  I told her I don't have a way to get it on monday especially since I hope to be in Va with my new grandson.  She said once it was ready she would call and deliver it herself!  I am not used to that :)  After 6 doses they want us to repeat the labs.
  She had low Vit K levels years ago and was on regular vit K for a long time.  the reason we found out before was she was bruising a lot.  When we went to hematology for the bruising and vit K, that's when they found she has VWD!
  the spinal fusion surgery is one of the most bloodiest I was told.  the ortho surgeon told her the greatest risk for Hannah is bleeding out since she is so small (only 38lbs and 40" tall)  So I am thankful they are being aggressive with the bleeding issues now.  We are only 4 weeks away from surgery now.

Hannah hematology appt

Hannah has an appt with hematology wed,  I hate appts that are late in the day, this one is at 1pm :(   gets us home really late and into rush hour traffic.   Years ago she was diagnosed with von Willebrand disease, she has a  mild case. The last time she had surgery (years ago)  they used the DDAP before.  The next day after surgery she had a major seizure that couldn't be stopped with anything...they finally found that her sodium levels were very low and when they gave a major dose of saline, it stopped.    What impresses me is that it was picked up when her pre surgery  things we being set up.  It shows me they are on the ball about things. So she is having bloodwork done and then we meet with a hematologist to discuss it.  I am glad about it since her dr is concerned about her bleeding out since she is so small.


http://www.nhlbi.nih.gov/health/dci/Diseases/vWD/vWD_WhatIs.html 

The Miracle of Mercy Land by River Jordan blog tour

Mercy Land has made some unexpected choices for a young woman in the 1930s. The sheltered daughter of a traveling preacher, she chooses to leave her rural community to move to nearby Bay City on the warm, gulf-waters of southern Alabama. There she finds a job at the local paper and spends seven years making herself indispensible to old Doc Philips, the publisher and editor. Then she gets a frantic call at dawn—it’s the biggest news story of her life, and she can’t print a word of it.
Doc has come into possession of a curious book that maps the lives of everyone in Bay City—decisions they’ve made in the past, and how those choices affect the future. Mercy and Doc are consumed by the mystery locked between the pages—Doc because he hopes to right a very old wrong, and Mercy because she wants to fulfill the book’s strange purpose. But when a mysterious stranger shows up, Mercy begins to understand she may have to choose between love and loneliness . . . or good and evil . . . for the rest of her life.

RIVER JORDAN began her writing career as a playwright with the Loblolly Theatre group. She teaches and speaks nationwide on ‘The Power of Story’, is a monthly contributor to the southern authors’ collective A Good Blog is Hard To Find, and produces and hosts the weekly radio program CLEARSTORY with River Jordan, in Nashville, where she and her husband live. She is the author of Saints in Limbo and this is her fourth novel.

This book really makes you examine the choices you have made in you life...how they affect your life and the lives of others that you come in contact with, now or in the future. A good book that keeps you on the edge of your seat wondering what is going to happen next! :)

Making friends Monday!

A good way to make friends today!

Join swagbucks today!

If you look on the right side of this blog, there is a swidget for swagbucks...click on the swagcode button and use that code to sign up and earn an extra 20 swagbucks...
use this link to sign up and we both win!
http://www.swagbucks.com/refer/joanjones
now is a great time to start, I am using my swagbucks to buy amazon.com gift cards to use for Christmas gifts! It's easy to earn swagbucks just for searching!

Hannah update

Hannah is still having tons of secretions, very thick almost plugging her trach..thankfully she still has a pretty good cough. For the last week she has been having more seizures than normal. :(
thursday we are going to dupont, she has an appt with GI for followup. And then we are seeing a hospitalist (for the first time) about her upcoming surgery. I just realized it's only a little over a month away now!
Jenn and Bob's baby is due in two weeks! so please pray that when she calls, the extra nursing (respite) will fall in place for us to be able to go!
thanks for the continued prayers for us!

Hannah's story

Chuck and I were married in June 77. In 3/81 our oldest daughter Becky (Rebecca Lynne) was born, 2/83 our middle daughter Jenn (Jennifer Michelle) was born. When they were 12 & 14yo we had Hannah Grace (7/95).
We were surprised when she was born with all the issues they found. I was 37yo when I had her and the whole pregnancy just knew there was going to be something wrong with the baby (didn't know the sex back then). I didn't tell anyone I felt that way, I just thought it was my age and you hear that the older you are, the greater chance for a child to have down syndrome.
At 21 weeks they did an ultrasound to check the due date. Because she was small, they said I was 17 weeks. I knew I was right, when it's your 3rd pregnancy you know when you are pg! LOL they tried to get a profile of her but she kept turning her face to follow the probe thing. If they had gotten a profile, we would have seen a very large obvious cleft lip. But we never saw that. My uterus measured a normal size so they never did another US. I had also refused all testing and they had me sign papers saying I refused it. About two weeks before she was born the dr asked how big our older girls were, I told him 6 lb 13 oz and 6 lb 10 oz. He said I think we are looking at 6 1/2 - 7 lbs here! He was totally shocked when she was born and was so small! She was 3lb 14oz and 16 1/2" long! Immediately they saw the small size, very large cleft lip and palate and realized there was a problem. Interestingly her APGAR score was a 9! Her lip was very ugly but she was beautiful. Becky was in the delivery room and her first words were "Mom, she is beautiful!"
they tried feeding her and she aspirated and got her first of many aspiration pneumonia's then. They came in and told me she had pneumonia and would have to go up to the NICU. When they said the helicopter would be there soon I was shocked, I didn't know they didn't have a NICU there and up to the NICU meant going to Baltimore MD! I thought they meant upstairs! I later found out that most parents didn't understand that either!
She was in the NICU for 3 weeks. While there her bloodwork showed she had a deletion on her first chromosome. She was missing bands 21 -25 on the long arm. (this summer 2010, we redid her blood work for her chromosomes and found that her deletion is actually 1q 24-31! That is a very large deletion that controls a lot of things. Testing had changed a lot in 15 years!
She was sent home from the NICU with an NG tube for feedings and an apnea monitor. I don't think they really expected her to live long and she didn't get her gtube surgery until she was 3 months old! She was still too small to have her cleft lip or palate surgery. She had a good suck, she loved her pacifier but looking back her problem was she couldn't swallow. they did a PH probe to test her for reflux and found that she had over 300 episodes in 24 hours. It was silent reflux, she rarely spit up but was constantly crying and miserable.
So at 3months, she got a nissen and gtube. She was a different baby then, hardly every crying. She didn't sleep much and drove her sisters crazy at night! Our room is down the hall so we didn't hear her but they were right across from her!
When she was around 11 months old she had her first status seizure. That started her with many aspirations and seizures that ended up with her flying to Baltimore to the hospital. At that time she was learning to sit alone and could do a few things like roll around and roll over. We also found out that she is profoundly deaf and has cortical vision (she is considered to be deaf/blind) We don't know what she sees or hears.
She had a lot of trouble breathing at times so it was suggested that she get a tracheostomy when she was 3 1/2 yo. I was a little shocked but did some research and decided it was the best thing for her then. She did well but was in the rehab hospital for 5 weeks waiting for nursing to be approved! Finally she qualified for a Medical Assistance waiver and was allowed to go home. That was in Jan 99.
She still had constant aspirations so in 2001 she had a surgery to stop aspritations. It was called a laryngotracheal separation and completely cut off her upper airway from her bottom airway (lungs). This surgery is permanent and means she will always have a trach. She can't breathe through her mouth and nose anymore. She also can't make sounds since no air goes past her vocal chords. That is why she is so quiet! :)
She hasn't had pneumonia since then! She still has a lot of respiratory problems and gets a lot of neb treatments around the clock. It was found that because of all the aspirations she acquired trachomalacia and bronchomalacia so she was put on CPAP. She uses a ventilator for the CPAP. She has nurses her with her at night for 12 hours. Two days a week she gets an extra 4 hours for me to go to the dr etc. She doesn't know not to pull on her trach, etc and if she pulls her trach out, she can't breathe, so she has to have "awake care" 24/7!
Hannah's seizures have gotten worse over the years and she has lost a lot of her "abilities" She is developmentally about 2 -3 months in age. She can't do anything for herself at all.
We always knew she had a neurogenic bladder but last year found that her brain doesn't tell her spinchter to open so we have to straight cath her 4 times a day for residuals. Sometimes we can get as much as 500cc's from her tiny body! At 15yo she is weighs 38lbs and is 40" tall. She wears a size 5 infant shoe and can wear slightly larger than newborn hats.
We had been watching her scoliosis for the last few years. In two years her curve went from 31 degrees to 75 degrees so in Nov 10 she is having spinal fusion surgery. We are not looking forward to that at all, but know it is necessary.
I know I have left out a lot. She has had multiple surgerys for her cleft lip and palate but at this time they are still not completely repaired, it's all cosmetic and we have always said we would only do what is the best for her to keep her comfortable.
Prayer is the one thing that has gotten us through all this. Hannah would not be where she is without it. I thank the Lord for the opportunity to be her Mom.
  

feeling better

Hannah seems to be feeling better today. The gagging etc are much better but she still has a lot of seceretions. Thanks for praying.
A nurse from general pediatrics at A I duPont called today to schedule Hannah an appt with a hospitalist for her upcoming surgery. Thankfully they fit it in next week on the same day she has an appt with GI.
I was looking around the hospital website and found this link about spinal fusion surgery that she is having.


http://kidshealth.org/parent/medical/bones/scoliosis.html#

Hannah is sick again

She started with a lot of extra secretions on saturday and had a few more seizures than usual. Sunday morning I noticed her face flushed for just a second and hoped it was a fluke. She was fine during Church, didn't even have to take her out and suction her like I usually do. After we got home, she started with the hiccups, face flushing and chewing, later she started gagging, she hadn't done that with the other episodes like this :(
Michele said she had a terrible night. Today was a little better. She has been trying to sleep but everything keeps waking her up. Gave her pedialite today to give her tummy a rest.
She has episodes like this every couple months and we don't know why!

www.vote4hope.org

http://www.vote4hope.org/hope4hannah/

Don't forget to vote!

Voting starts today, you can vote once every day! thanks
http://www.refresheverything.com/fundhopeforsickkids

Vote 4 Hope

Global Genes Project with Vote 4 Hope
is gearing up for a tough month of voting during September with a great
Pepsi Refresh idea, we could use a little help, please stop by the
page. You can subscribe to reminder emails at www.vote4hope.org. Thanks! Vote4Hope | www.vote4hope.org

This is a project Hannah is a part of, she will be a featured child one day in Sept!

I took Hannah to an orthopedics appt today, hadn't been in two years...her spinal curve went from 41 degrees (moveable) to 75 degrees (not moveable) today! I guess I wasn't surprised when we had to talk about spinal fusion surgery! was just hoping that day wouldn't come :( We have decided it needs to be done so please pray for the timing to be right. Jenn 's baby is due the end of Oct and Becky's baby is due the end of Jan. He said they are scheduling into Oct and Nov now. this will mean 2 weeks in the hospital, 1 week in intensive care and 1 week in rehab.
thanks
joan

Shades of Morning by Marlo Schalesky Blog Tour

Summary:
Marnie Wittier has life just where she wants it. Quiet. Peaceful. No drama. A long way away from her past. In the privacy of her home, she fills a box with slips of paper, scribbled with her regrets, sins, and sorrows. But that’s nobody else’s business. Her bookstore/coffee shop patrons, her employees, her friends from church—they all think she’s the very model of compassion and kindness.
Then Marnie’s past creeps into her present when her estranged sister dies and makes Marnie guardian of her fifteen-year-old son—a boy Marnie never knew existed. And when Emmit arrives, she discovers he has Down syndrome—and that she’s woefully unprepared to care for him. What’s worse, she has to deal with Taylor Cole, her sister’s attorney, a man Marnie once loved—and abandoned. As Emmit (and Taylor) work their way into her heart, Marnie begins to heal. But when pieces of her dismal past surface again, she must at last face the scripts of paper in her box, all the regrets and sorrows. Can she do it? Or will she run again?

Author Bio:
Marlo Schalesky is the author of several books, including Beyond the Night and Empty Womb, Aching Heart. A graduate of Stanford University, Marlo also has a masters of theology with an emphasis in biblical studies from Fuller Theological Seminary. Married over twenty years, she lives with her husband, Bryan, and their five children in California.
Wow, what a great book! I couldn't put it down from the time I started reading it! I have a daughter with a chromosome deletion and have friends with downs so it was a story that hit home with me. Such loveable characters that you can't help falling in love with! You have to read this book, it is one you will never forget!
http://www.amazon.com/exec/obidos/ASIN/1601420250
this book was provided free from the publisher.

Crosswalk Fiction Sweepstakes

Crosswalk Fiction Sweepstakes

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Here Burns My Candle by Liz Curtis Higgs
A timeless story of love and betrayal, loss and redemption, flickering against the vivid backdrop of eighteenth-century Scotland, Here Burns My Candle illumines the dark side of human nature, even as hope, the brightest of tapers, lights the way home.

Anna Finch and the Hired Gun by Kathleen Y’Barbo
Despite her father’s attempts to marry her off, Anna Finch dreams of becoming a reporter. A chance encounter with legendary gunslinger Doc Holliday gives her the opportunity of a lifetime, but Pinkerton agent Jeb Sanders is about to ruin everything.

The Bridegrooms by Allison Pittman
For years, Vada Allenhouse has lived a bland existence, caring for her three younger sisters, tending to her physician father, running errands for the local orchestra, and courting her passionless beau. But when a baseball fan is struck by a ball and whisked to the house in secrecy, the excitement and cast of visitors he attracts bring new life to Vada and the entire family.

HOW TO ENTER:
Click here to submit your entry. Fill out the form and be sure to enter the link to your blog post in the “notes” field and in the “contest code” field enter the appropriate code: For Anna Finch and the Hired Gun by Kathleen Y’Barbo enter the code “ANNA”, for The Bridegrooms by Allison Pittman enter the code “BRIDE” and for Here Burns My Candle by Liz Curtis Higgs, enter the code “CANDLE”.

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Hannah

When we saw the GI dr she wanted Hannah to have an upper GT to rule out reflux, to see if her nissen has come loose or undone. Saturday night she started doing the mouth moving thing kinda like chewing nothing that I am not sure about and getting the hiccups. She had been acting like she didnt feel good all day. the chewing thing and hiccups went on all night and through this {monday) morning. I had given her pedialite yesterday and overnight..she seems much better today, back to full feeds. Does that sound like reflux? she also hadn't had a bm since thurs and finally had a good one this morning. Not sure what to think but glad her upper GI is this friday!

The Last Christian by David Gregory

In the future, it’s possible to live forever --- but at what cost?

A.D. 2088.

Missionary daughter Abigail Caldwell emerges from the jungle for the first time in her thirty-four years, the sole survivor of a mysterious disease that killed her village. Abby goes to America, only to discover a nation where Christianity has completely died out. A curious message from her grandfather assigns her a surprising mission: re-introduce the Christian faith in America, no matter how insurmountable the odds.

But a larger threat looms. The world's leading artificial intelligence industrialist has perfected a technique for downloading the human brain into a silicon form. Brain transplants have begun, and with them comes the potential of eliminating physical death altogether --- but at what expense?

As Abby navigates a society grown more addicted to stimulating the body than nurturing the soul, she and Creighton Daniels, a historian troubled by his father's unexpected death, become unwitting targets of powerful men who will stop at nothing to further their nefarious goals. Hanging in the balance --- the spiritual future of all humanity.

In this fast-paced thriller, startling near-future science collides with thought-provoking religious themes to create a spell-binding "what-if?" novel. 

This book is a must read for every Christian.  It's very thought provoking.  I never thought about what the future might look like..this book gives a very real picture of how things could be. I suggest you read this book

to read the first chapter:

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to buy the book

http://waterbrookmultnomah.com/catalog.php?isbn=9781400074976

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this book was provided by waterbrook multnomah

another for SN moms

moms tell their kids to wake up and get dressed in the morning. And they do it.

Special needs moms put on battle gear to get our kids ready to start their day.

Regular moms ask their kids if they brushed their teeth.

Special needs moms prompt, “Brush your top teeth. Brush your bottom teeth. Did you get the sides?
Open your mouth. My God, give me that toothbrush! You’ve left half your meal in there!”





Regular moms wave goodbye as their kids run off to catch the school bus.

Special needs moms get awesome door-to-door bus service for their child.

Regular moms know the names of all their friends.
Special needs moms know most of their friends by their username.


Regular moms judge other moms when kids have tantrums in stores.
Special needs moms say to themselves, “Hmm, I wonder which disability he has?”


Regular moms complain about driving their kids to sports and recreation classes.
Special needs mom grin and bear the weekly trips to tutors, doctors and therapists.

Regular moms’ kids have a teacher.
Special needs moms’ kids have a team.


Regular moms talk about accomplishments.
Special needs moms talk about skills, as in play skills, conversation skills, life skills, social skills and vocational skills.

Regular moms relax with their kids during the summer.
Special needs moms start their second job as home teachers, therapists and skills coaches.


Regular moms think accommodations refer to hotels.
Special needs moms have memorized the top 20 accommodations for their child.

Regular moms hope their child finds a good career.
Special needs moms are hopeful someone gives our child the chance to work.


Regular moms soak in the tub when they want to unwind.
Special needs moms consider a bathroom break a luxury.

Regular moms enjoy reading the latest best selling book.
Special needs moms should receive an honorary degree for all the disability books they’ve read.


Regular moms go out for dinner and a movie with their husbands every month.
Special needs moms have a date night with their husbands every…wait, what decade is this?

Regular moms complain their kids won’t eat their vegetables.
Special needs moms are so desperate we consider chicken nuggets to be a legitimate meat product
and throw in ketchup as a vegetable.

Regular moms’ kids go to play groups.
Special needs moms’ kids go to therapy groups.


Regular moms meet for a ladies night out.
Special needs moms get together at support groups and forums.


Regular moms have medical claim forms that fit in one file folder.
Special needs moms will tell you a small forest was cut down so we could receive our claims.


Regular moms think OT means overtime.
Special needs moms know more acronyms than a NASA engineer.

Regular moms complain their husbands sit on the couch while they do all the work.
Special needs moms…well how about that? Some things do stay the same!


Got more? Let’s hear them! Send your “regular moms versus special needs moms” to info@oneplaceforspecialneeds.com
Dawn VillarrealAbout the writer

Dawn Villarreal runs One Place for Special Needs, a national disability resource that lets you find local and online resources, events and even other families in your neighborhood. She is also moderator of Autism Community Connection, a Yahoo group for families in Illinois. Dawn has two awesome kids and strives for a day when communities can effectively reach out to support all special needs. Reprint permission granted by including: Reprinted with permission from One Place for Special Needs http://www.oneplaceforspecialneeds.com

Popularity: 5% [?]

If you are an extraordinary Mom of a special needs child...this one is for you!

thanks to my friend colleen for this

This One Is For You

If you are an extraordinary Mom of a special needs child...this one is for you!


Mothers Lie

By Lori Borgman

Expectant Mothers waiting for a newborns arrival say they don't care what sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.

She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.

She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.

The doctor's words took your breath away.

It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.

It didn't seem possible.

That didn't run in your family.

Could this really be happening in your lifetime?

There's no such thing as a perfect body.
Everybody will bear something at some time or another.

Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.

Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it.
Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day.
How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.
You snap, you bark, you bite.
You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,
"Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack.
You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.
You're a neighbor, a friend, a woman I pass at church and my sister-in-law.

You're a wonder.

free dunkin donuts coffee

Hannah - feeling better

Hannah is feeling a lot better now...still coughing some. I think I got it worse than she did but that is good :) it felt good to get back to church today although it was weird this morning not to take Hannah. the nursing agency screwed up again and molly came in late so she stayed til we got home from church.
Her seizures are back to her "normal" ones. we have increased her klonopin again. usually that makes her really sleepy but it's almost like she is getting immune to it :( we don't have a neuro appt til June. the increase in all her meds is making her kinda drugged during the day just not sleeping like she usually does.
we saw the GI dr last week, I really like her. Hannah's weight was up to 39lbs! that is way too much for her small body :) She is only 40" tall and has a very small head. (on the wii fit board she is a perfect weight ) So, I took her to the peds office to get her official weight, 38 lb 14 oz :) so now we had to decrease her feeding even more. Waiting for a call back from her about adding some protein to her formula. She already added some extra fiber since she is afraid she's not getting enough. She asked about the hiccups and I told her she had only had 2 major episodes since we last saw her. I told her about her gtube site getting red a lot lately. She thinks it's stomach acid and is afraid with some other symptoms that her nissen might be loose or udone. She had ordered an upper GI study when we last saw her but because of the all the bad weather I never had it done, so its now scheduled for the end of may. She added pepcid to her meds to see if it helped, not sure what though LOL

Hannah is sick :(

Last week taylor got a cold and then becky got it..saturday morning I woke up with it and the nurse said hannah had a rough night. I had been planning on taking her to dr kyle's office for a weight check but ended up having her look at hannah....she said it is probably viral and gave us a scrip for cipro just in case. She had been running a high fever for her and her heart rate was in the 130's.
today she has a temp again and she doesn't want to cough..her lungs had been staying clear but the nurse said she sounds junky right now so she did an extra neb treatment...her cough is very hoarse and sounds really bad with a trach...she hasn't been this sick in a long time.
I am still coughing and congested too but taylor is finally getting better!

Forget Me Not by Vicki Hinze

Forget Me Not
by Vicki Hinze

Summary:

A mother who cannot face her future.
THEIR ELUSIVE ENEMIES TOOK EVERYTHING. NOW THEY WANT MORE.

Crossroads Crisis Center owner Benjamin Brandt was a content man—in his faith, his work, and his family. Then in a flash, everything he loved was snatched away. His wife and son were murdered, and grief-stricken Ben lost faith. Determination to find their killers keeps him going, but after three years of dead ends and torment, his hope is dying too. Why had he survived? He’d failed to protect his family.

Now, a mysterious woman appears at Crossroads seeking answers and help—a victim who eerily resembles Ben’s deceased wife, Susan. A woman robbed of her identity, her life, of everything except her faith—and Susan’s necklace.

The connections between the two women mount, exceeding coincidence, and to keep the truth hidden, someone is willing to kill. Finding out who and why turns Ben and the mystery woman’s situation from dangerous to deadly. Their only hope for survival is to work together, trust each other, and face whatever they discover head on, no matter how painful. But will that be enough to save their lives and heal their tattered hearts?
A great suspense book that keeps you on your toes :) you will not want to put this book down...read it and find out the key...

Cover art:



Author Bio:

Vicki Hinze is an award-winning author of twenty-three novels, three nonfiction books, and hundreds of articles. Selected for Who’s Who in America in 2004 as a writer and educator, Hinze is active in Romance Writers of America and serves as a Vice President on the International Thriller Writers Board of Directors. Vicki lives in Florida with her artist husband, a retired Air Force Lieutenant Colonel. Visit www.vickihinze.com to learn more about Vicki’s books, blogs, and writing programs.

Do you have any blogger friends who might like to participate other blog tours? Please direct them to the official WaterBrook Multnomah Blogging for Books site page at http://www.randomhouse.com/waterbrook/bloggingforbooks/.





http://waterbrookmultnomah.com/catalog.php?isbn=9781601422057



This was book was provided for review by WaterBrook Multnomah