joan's blessings

I Run 4 (IR4) Promo, who do YOU run 4?

2013-11-02T07:05:00.001-07:00

http://www.youtube.com/v/mUDXsOTYn6U?autohide=1&version=3&feature=share&attribution_tag=zTEUu3Rugdm_ZOpDAoQpLA&showinfo=1&autohide=1&autoplay=1

Enter to Win a Kindle Fire

2013-07-15T16:34:00.001-07:00

Enter to win a Kindle Fire

New Soft Scrub 4-in-1 Toilet Care Review

2013-05-18T08:42:00.000-07:00

Soft Scrub 4-in-1 toilet care in unlike other toilet bowl rim hangers since it stays in place and doesn't dissolve too quickly. It cleans toilets, prevents future buildup, fights toilet ring and freshens up to 4 weeks.

I put one in my toilet and forgot about it. My 4yo grandaughter Taylor came running out of the bathroom saying, "I found something, Grami!" I had to run and see what she found.


Soft Serub 4-in-1 toilet Care

I laughed and told her that was cleaning the toilet. She thought it was cool. When she came back a couple weeks later, she realized it was gone. I told her it had done it's work and had to throw it away. She was concerned because there wasn't anything replacing it.
I think it worked pretty good, my toilet is tan in color so sometimes it is hard to tell.

Share this post on facebook and comment here with the link to get a coupon for ANY soft scrub product free!

The Soft Scrub brand provided me with a sample of Soft Scrub 4-in-1 toilet care in exchange for a product review. However, the opinions expressed here are my own.

Dial Kids Body & Hair Wash Review

2013-05-08T09:01:00.001-07:00

New Dial Kids Body & Hair Wash comes in specialized formulas for ages 2-5 (Peachy Clean) and 6-10 (Watery Melon). The 2-in-1 formulas combine shampoo and body wash for one speedy step.
Developed with pediatric dermatologists too be tear free, hypoallergenic, no artificial dyes or added parabens and is PH balanced.
I gave a bottle to my daughter to try on my 2yo grandson Logan. It has a wonderful peachy smell, not fake smelling like some products. I love that it is formulated for his tender young skin.

peachy-clean-body-hair-wash

Dial provided me with a sample of Dial Kids Body & Hair Wash in exchange for a product review, however all the opinions expressed here are my own.

a Rafflecopter giveaway

enter the hair salon giveaway on facebook

New Dry Idea Advanced Dry Fresh Brand Antiperspirent Review and Giveaway

2013-04-02T08:53:00.000-07:00


Never let them see you sweat!

New Dry Idea offers enduring odor protection for up to 72 hours and pulse activated Wetness Protection to keep you dry all day long! It is formulated with Vitamin E for a silky smooth application. It guarantees to "NEVER LET THEM SEE YOU SWEAT!
This new product is available in a roll-on 3.25oz size, scents are unscented, powder fresh and regular. It is also available in a clear gel 3.0 oz in unscented and powder fresh scents.
I tried the roll-on in the fresh scent. I normally like my deodorant unscented but was pleasantly surprised that the fresh scent really does smell fresh! I really liked it when I am exercising, I saw that it really did control the wetness.
Dry Idea brand provided me a free sample of Dry Idea Advanced Dry so I could review it. However all the opinions expressed here are my own.
I have 4 free coupons to give away. Comment on this blog post and include the link where you shared this blog on facebook and or twitter.

Take Your Tastebuds To The Tropics!

2013-03-04T17:12:00.000-08:00

This new cereal has 10 whole grains and 4 wholesome grains. With 9 essential vitamins and minerals, only 6 grams of sugar and 120 calories per serving. It is heart healthy with 0gr trans fat.

I tried this cereal and liked it a lot. My first bite however I wasn't sure I was going to like it, but once I started it was good, the flavors blend very well and I could taste the mango and coconut separately so I could tell they were both in there. I think adults and kids will both like this cereal, it has just enough sweetness for kids but not too much for adults. I don't like cereal with a lot of sugar but this wasn't too sweet.
I have 3 free coupons to give away. share this blog post on fb and then comment on here with the link to that post.

free coupons

Post provided a free sample of their Honey Bunches of Oats Tropical Blends for this post. The opinions expressed are my own.

the kit sent to me by Post

Hannah Grace One Of A Kind

2013-02-20T13:18:00.000-08:00

I started a facebook page for Hannah, it is so much easier to update facebook than this blog , sorry for the lack of updates :(
https://www.facebook.com/hannahgraceoneofakind


This hair bow was the inspiration for the fb page name

Hannah on Super Bowl Sunday in her Raven's gear!

You can like her page and follow her there even if you aren't friends with me, my sister Mary said good now I don't have to be friends with you anymore LOL she is crazy, but I love her :)
We did get the results of Hannah's holter monitor. They had told us she had a grade 1 AVB heartblock and that is something normal healthy people have but in the 30 days, they saw a few episodes of a grade 2 AVB heartblock. They want to do a 24 hour inpatient holter monitor about every 6 months or so to make sure it doesn't progress too fast. If it happens too often they would have to put a pacemaker in but that is years away. I am so thankful now that we had to take her to the hospital that day, otherwise we wouldn't know anything about that!

Purex Crystals For Baby

2013-02-09T08:38:00.001-08:00

Purex provided me with a sample of Purex Crystals for Baby in exchange for a product review. However, all of the opinions expressed here are my own.

Purex Crystals are safe for children's sleepwear, they are hypoallergenic, dye free and 87% natural formula.
You add this right in with your babies clothes with your Purex Baby Detergent It takes your laundry to a whole new level. It has a baby inspired fragrance.

I have 2 coupons for a free bottle. Share this post on facebook and comment here with the link to your post for a chance to win a free bottle!

Purex Baby Detergent

2013-02-09T08:12:00.001-08:00

Purex provided me with a sample of Purex Baby Detergent in exchange for a product review. However, all of the opinions expressed here are my own.

Purex now has baby detergent, awesome baby fragrance from a company you trust for your laundry needs. Especially good for those with sensitive skin. I use it for Hannah, my 17yod with special needs, she has very sensitive skin. It also doesn't harm the delicate things like footie pjs.
Gentle on baby's skin...Tough of baby's messes! It is available in any store, and like other Purex products less expensive than the others. It is not available in a 50 oz size and coming soon 100 oz bottles.
I have 2 coupons for a free bottle. Share this post on facebook and comment here with the link to your post for a chance to win a free bottle!

Shadows & Secrets free download

2013-01-21T08:42:00.000-08:00

Shadows & Secrets
Another great free book by Chautonia Havig. I love all the unique characters in her books. This one is for young adults.

http://chautona.com/chautona/willow-wednesday-resumes/

2013-01-11T11:40:00.001-08:00

Chautona willow-wednesday-resumes/
I love reading all of Chautona's books...can't wait to read this one too.

Not the way to spend New Years...in the "ED and hospital

2013-01-02T12:20:00.000-08:00

Hannah has been doing ok but at 1am New years day, the nurse woke me up and said she couldn't get her heart rate out of the 30's no matter what she did. We tried to wake her up moving her around and everything...she was very pale and it scared us. We finally called 911 and they tried to wake her up too, it was decided to take her to the ED. When I took her off her vent and put her on the stretcher she finally woke up. Her heart rate went back to nomal then but we figured she needed to be seen anyway since we were on the way. of course when we got there she was "normal". After they finished fooling with her she started to go back to sleep and it only dropped in the 50's and 60's but as they watched, her heart rate kept "pausing" it would do 5 beats, pause, 5 beats, pause, 2 beats, pause and then do regular beats and then back to pausing. The dr there called the medically complex team here and told them what was going on and he decided she needed to be seen here at dupont.
i ran home when they decided to transfer her and took a shower to help wake up and pack for a least a week,, just in case. I went back to the hospital and got there when they were ready to take her so they told me to follow them.
We had only gone a few miles and they pulled over. the nurse ran back and told me Hannah was fine that the driver didn't feel good so they switched. We went on for a while longer and they stopped again to tell me that the driver was really sick and they needed to take a detour to Chester River Hospital to drop her off. After we finally got back on 301 we had to wait for another ambulance to come and give us another medic, since they were short. They finally got there and made some switches and the new ambulance went back and picked up the other medic and we continued to dupont. Everyone here laughed and said I couldn;t have made that up! I am glad I didn't just drive from home,, I would have been really worried where they were. It took over 2 hours to get here.
When we got here they put her on the cardio unit, not our usual 2A :( She made out fine except for a few seizures from not having formula or meds all day. They watched her all night and heart rate was fine. They do want her to wear a holter event monitor for about 1 month to see what is going on. We didn't get it yet. they did bloodwork and thought she might be in metabolic alkalosis again but after they repeated it, everything was ok. They said we could probably go home today but I asked for a couple consults. She had an appt scheduled friday morning with nuerology and tuesday with nephrology. the nephrologist came in it was the one we hardly ever get to see, so that was nice. He said he wants to repeat some labs next week from her port and since she has her port we can get labs more often and maybe not have to come in as often :) I agree! Neuro came in but our appt was with the NP and nutrionist so they are trying to get her to come in, i already saw nutrition.
so, staying an extra night is worth not having to come back for 2 appts later. They are supposed to be moving us to 2A but it hasn't happened yet and it's after 3:00
As usual life with Hannah is never boring and she never follows the rules...maybe an extra night is not such a bad idea after all.

Christmas, ketogenic Diet...

2012-12-26T15:22:00.002-08:00

We had a nice quiet Christmas at home. We normally go to my mom's house on Christmas day but she is visiting my sister Mary and her family in VA. We didn't do anything and ate when we felt like it, didn't even really cook. It has been a long time since we did that. Becky brought the kids over to get their gifts and stayed just a little while. We did the big Christmas Eve dinner with Chuck's family here so we wouldn't have to take Hannah out and get her back in time to do her meds etc. Our grandbabies had a lot of fun opening presents. Thanks to the hospital and RMH while we were there I got a lot of their gifts there.
Hannah has a UTI so we had to start her on bactrim. She had ecoli in her urine and it was only sensitive to bactrim. But, it is low on the ketogenic list so her ketones have dropped a lot. She finishes it on friday so I hope the ketones go back up then. She had 5 seizures in a 12 hour period for the nurse on Saturday night.
I did talk to the NP from neuro Monday and she said that they saw 12 seizures on the 48 hour eeg and from her description, they are her usual seizures. I didn't see her have that many so some of them must have been subtle. Thankfully she isn't having as many seizures as I thought, but that is more of those than I realized.
Hannah has also been constipated really bad and finally had some bm yesterday. But we can still feel some in her belly, so please pray she can get rid of that herself without being impacted.

Hannah at church Sunday, tried to get a pic of the lace on her shirt but she kept putting her hands in the way

Hannah with her tie dye peace pillow pet and giraffe she got for Christmas (things I picked out at the hospital.

Other than those things she has been her usual complicated self...she writes her own rules and doesn't like to follow anyone else's rules :)

Dial Holiday Foaming Hand Wash

2012-12-17T09:04:00.000-08:00

Dial provided a free sample of their Holiday Foaming Hand Soap for this post. My participation is voluntary and my opinions, as always are my own.
What fun decorations on the bottles. I got one with a snowman on it and looks really looks cute in my bathroom with the snowmen decorations I have. The other one is candy cane, I have that one in my kitchen. Both really look nice and bright for the holidays. I love the foaming hand soap it saves me a lot of money. the soap inside is red so it is very festive. I haven't found a refill in that color for it yet. I will leave these out all winter since they aren't just Christmas patterns. I love using cute soap bottles too and these are not expensive at all. The formula kills 99.99% of germs which is very important to me. I have a daughter who is medically very complex and is very susceptable to germs.
You can find info about the hand soaps on the Dial website. Or you can find them on https://www.facebook.com/Dial Dial, Healthier Skin, Healthier You!

My kit still in the box

A close up of the bottles

The snowman in my bathroom

The candy cane in the kitchen

Days 9 - now of the ketogenic diet :)

2012-12-09T17:01:00.001-08:00

Things have been really hectic since day 8 and the port surgery...first off we are HOME! Got home about 4pm on friday.
After Hannah's surgery, her ketones dropped from a high of 160 (good) to a low of almost nothing! The only conncetion we can find is since she has von willebrand disease, she has to have von willebrand factor through the IV for 4 days to allow her blood to clot. There must be something in the factor, it says it is a glycoprotein. The nutritionist said it must have some fat in it or something. After the last dose on thursday night, her ketones are slowly going back up. I think they are about 60 right now.
She has kept them guessing since we were admitted. The nutritionist, Nicole, said she knew Hannah would be different than most kids on the diet but she didn't realize how much different LOL they had put us on the red team, they deal with neuro. We are upset that they didn't put us on our gold team (medically complex) since neuro didn't do anythng for us. and they had to keep consulting others about what to do...the gold team would know what to do. I did run into dr M in the cafeteria and told him, he asked if there was anything he could do then but we were going home the next day so I told him we were good right then.
When she was in metabolic alkalosis, they took her off her sodium bicarb but when we left they put her back on it.
It has been busy getting all her prescriptions changed over to ketogenic friendly ones. Every change, medical assistance fights and says it needs to be pre authorized...coming home late friday to find out that 3 of the need pre auth and 1 is no longer avaiable! Now, I get to make a lot of phone calls tomorrow. Also one of nurses took Hannah's folic acid from me and they didn't give it back to me, so they are going to mail it to me.
She is on 4 feedings a day and overnight only water, that helps keep her in ketosis but the overnight water is running out at 3 am so I need to get that fixed. Before she was on 3 feedings and overnight. Making up her formula every morning is so much fun...not! I have to use a gram scale and it has to be calculated with everything we use...she gets keto cal liquid 327 grams, beneprotein 5 grams and 148 grams of water. That all has to be shaken really well, it tends to clump. Each feeding gets 120 ml of formula mixture and 120 ml of water. The water is important in this diet, they can get kidney stones and we don't want that!
It felt so good to get in our own beds and the shower felt even better :) Today we got to go to church, we missed it the last two Sundays. Things are slowly getting back to "normal".

Day 8 of the Ketogenic Diet

2012-12-04T16:22:00.001-08:00

Hannah had her port placement this morning. They called really fast to take her so I didn't have warning...later the surgeon said he moved his schedule around so he could get it done quicker. She did much better than he thought she would. i found out this morning because of her bleeding disorder (von willebrands) she had to have the factor of it before surgery and 3 days after..so we will be her til friday. but that is kind of a mute point right now, she is not in metabolic acidosis, it is metabolic alkalosis. So they have are reducing her sodium and stopping her sodium bicarb. They need to watch that now, in the past without the sodium bicarb she has gone into metabolic acidosis :)
Her blood pressure has been up since surgery so she seems like she is in some pain. they gave her some morphine to see if that would help. She has been asleep since I got back from dinner. Normally when she has surgery she is already on pain meds, but this was quicker than the rest.
Thanks for your continued prayers
joan

Day 7 of the ketogenic diet

2012-12-03T17:10:00.000-08:00

Hannah's ketones are 160 now! 80-160 is where they want her to be. Her blood gases today were a little abnormal so she is in metabolic acidosis. They just need to watch her to see if they need to increase her sodium bicarb. She has done this before and is one of the things I was worried would happen during the diet. We won't go home til they get that under control.
She is probably having surgery tomorrow morning to have a port put in for blood draws. They were checking her clotting factors today since she has von wilebrands a bleeding disorder too. The nurse is going to check for me to make sure. I will post more tomorrow.
joan

Days 5 & 6 of the ketogenic diet

2012-12-02T13:36:00.000-08:00

Things are about the same, ketones are staying around 80. That is the low end of where she should be. Her heart rate is still a little higher when sleeping but neuro said that could be because she is in a fasting state almost dehydrated, so that could be a new normal for her. It's running right around 100 and usually it's 70's to 80's when sleeping.
Her eyes are much better with the ointment they are using. If we go home on them I am asking for drops, the ointment is so messy.
They said surgery should be coming by to talk to me about a port. If they can schedule it I would rather stay one more day than have to come back. We live so far away this will give us extra assurance if her levels are off too much and we need to check her blood.
Her sodium level was low so they gave her extra and now it's a little higher than usual so they are going to reduce it a little. They have already cut back on her seizure med, trileptal. We had talked to neuro and nephrology about getting her off of it since it can cause low sodium levels.
I think she is doing pretty good considering all that is going on.
joan

Day 4 of the ketogenic diet

2012-11-30T12:05:00.000-08:00

So, this morning still not many ketones but this afternoon her level had finally gone up to 40!! The nutritionist said she was ready to celebrate! they are giving all her formula in 4 feedings and just giving her water overnight and it seems to keep her in a better fasting mode. So now we watch her this weekend and may not go home until monday but at least not til Sunday.
She might have a bug of some sort. Over the weekend she had a lot of secretions and drainage from her eyes. we assumed it was allergies, no fever or anything but when we got here on Tuesday, it was better. Allergy said it shouldn't be her allergies right now but they did put her on claritin. Now she has some nasty looking secretions from her trach and green drainage from her eyes (they started eye drops yesterday) and now some diarhea but that could just be from her meds. So we are just waiting to see how she does.
we really want her to get a port for access for bloodwork but they wanted to make sure her sodium levels were ok. I told them I would rather stay an extra day to get that done than have to come back again and get her exposed to more germs. At least here she is on contact precautions for her MRSA.
joan

Day 3 of the Ketogenic Diet...much better!

2012-11-29T13:42:00.000-08:00

This morning after 48 hours and almost 24 of fasting, Hannah finally has ketones and her glucose level is going down. they both have a ways to go but they are trending in the right directions! No teaching today so it has been a pretty quiet day...except for blood sticks and her blood keeps coming :( lots of mess..Hannah is a hard stick and her tiny little veins roll but she also has a bleeding disorder so once it starts, it's hard to stop...can't win.
At least she is finally headed in the right direction..now we have to pray that insurance covers all the meds and things that she needs...glucometer, vitamins, etc.
joan

2012-11-28T11:51:00.000-08:00

Day 2 of the ketogenic diet...frustrating! Hannah should at least be in a a little bit of ketosis by now, but she is not! So now she is fasting for 24 hours to help that. So instead of going home on friday it will be at least Sunday.
She is doing ok other than that. Talked to her medically complex dr today and he wants to go ahead and get a port for blood draws..it was really bad yesterday and today they squeezed blood out of her finger after a blood sugar check.
As usual, she likes to be difficult! LOL
the supervisor from the nursing agency was here today for teaching of the ketogenic diet and how to use a glucometer to check her sugar levels. A lot to learn.
Joan

2012-11-27T12:35:00.000-08:00

Day 1 of the ketogenic diet...very stressful. They told me to be here at 9:30 or 10:00 to be admitted and if a room wasn't ready, they would send us to day medicine. When I went to admitting they said I was an hour early and didn't need to be here til 11:00. So we went to day med. They called and said they had a room..so the elevator stopped at the 2nd floor and when i went to get off the day nurse med said we are going to 3C. I told her we can only go to 2A since Hannah has a trach so when we got there, they called 2A and they weren't expecting us...so we came to the floor and had to wait for them to move 3 kids around to make room for us (she is MRSA positive) Finally we got a room, they laughed and said we got upgraded! We are in a private corner room, the only room with it's own bathroom. We were in this room 2 years ago and were here for a month. She had spinal fusion 2 years ago yesterday and while in surgery, she went into kidney failure and had to have dialysis!
She just got her first feeding of ketocal...a ratio of 3 to 1. they will watch her ketones and will slowly increase the feeding til it's full strength. She has to be at her regular feeding schedule and have normal labs to go home.
The IV team came in and almost gave up on giving her an IV, they were shocked at how much her veins rolled and how she could wiggle her arms and make them roll more. so we are protecting that IV. I think I need to approach having a port put in again. the ketogenic diet is going to have us doing more labs than usual.
They were full at the ronald mcd house and didn't have a room for me but the social worker called today and they had some check outs so they finally had a room for me, thankfully.
I will update more as things change.

Purex plus Oxi Detergent

2012-10-31T08:39:00.000-07:00


PurexPlusOxi.jpeg

I got a chance to try out the new Purex Plus Oxi.
this is an awesome product, it's Purex detergent with Zout stain remover. You can also use it as a pretreater. I used it on Hannah's blanket that had some stains on it. It got it out right away and left a nice smell. Chuck doesn't like "flowery or girly" scents but he liked this new one.
Post the link to this post on your facebook page for a chance to win a coupon for a free bottle of it. "Joan's blog sent me for a chance to win a free bottle of Purex plus Oxi"
Purex is running one of several giveaways right now to tie in with their release of new Purex Plus Oxi, with very nice CASH prizes--
(1) Grand Prize: $1,000
(250) 2nd Place Winners: $25
You can enter once daily and the drawing ends on November 30th. Here is the link to that giveaway--Good Luck!

Purex website: purex.com
Twitter: @Purex
Facebook: @Purex

Letter of Medical Necessity for the Ketogenic Diet

2012-10-11T14:03:00.001-07:00

this is very interesting and explains a lot about the Ketogenic Diet that Hannah is starting. The date has been changed to November 27. I just realized that her spinal fusion 2 years ago was 11/29 the Monday after Thanksgiving and this is the Tuesday after Thanksgiving!

RE Ketogenic Diet

To Whom It May Concern:

Hannah Jones is a 17 year old young lady with a diagnosis of static encephalopathy secondary to a chromosomal abnormality (1q21325 deletion) resulting in significant mental retardation, complex partial seizures with secondary generalization, hypothyroidism, deafness and blindness. Hannah's seizures have remained intractable despite being tried on multiple medications to include,Topamax, Dilantin, Tegretol, Depakote, Lamictal, Zonegran, Phenobarbital, Gabatril, Keppra, Klonopin, Trileptal, and Banzel. For this reason, our next step is to try the Ketogenic Diet as treatment for Hannah's uncontrolled seizures.

The Ketogenic Diet is a rigid mathematically calculated diet that has been an approved mode of therapy for children with intractable seizures. The diet has been in existence since the 1920s and it NOT EXPERIMENTAL. It is a high fat, low carbohydrate, low protein diet designed to maintain a patient in a constant state of ketosis. It is ketosis that serves to abate seizures. Statistics from Johns Hopkins University Hospital show that about 25% of the children placed on the diet have their seizures controlled, 50-60% show significant improvement, and 25% have little improvement or are not able to tolerate the diet for other reasons.

Many centers do not use the diet or are not familiar with it because of its strict requirements and the commitment in knowledge and energy required on part of the Epilepsy Center staff to effectively implement the diet. At The Alfred I. duPont Hospital for Children we have a team of individuals who have been trained in the use of the diet. The team includes the pediatric neurologist, an advanced practice nurse, dietician, pharmacist, and psychologist. Our inpatient nurse staff, who have been trained in the use of the Ketogenic Diet, are also very important to successful implementation.

RE: Hannah Jones

DOB: 7/9/1995

MR#: 10323085

Induction of the diet involves approximately a five day hospital stay. During the first 48 hours, the child is fasting to deplete carbohydrate stores and achieve ketosis.

Hospitalization is necessary to closely monitor and treat hypoglycemia as well as medical toxicity. The high fat diet is then slowly introduced over the next three days. Complications during this period may include hypoglycemia, or low glucose, excessive ketosis, nausea, vomiting, and diarrhea.

In addition, hospitalization provides time for extensive teaching, and impresses upon the parent the seriousness of the diet. While the latter is not the foundation for why we choose to do this inpatient, it helps to assure success, commitment, and compliance to the diet once the family goes home.

What we hope to achieve through the use of the Ketogenic Diet is complete cessation of Hannah's seizures, or atleast significant reduction of them. We would also like to achieve an elimination or significant reduction of some of the medications Hannah is on, thus making her more alert throughout the day and improving quality of life. With the cessation of, or reduction in the number and severity of her seizures, and the possible reduction of anticonvulsant medications, this should ultimately reduce the number of ER/hospital admissions in the future.

Hannah is scheduled for admission to the Alfred I. duPont Hospital for Children on 11/27/2012. If you have any questions, or if I can be of further assistance, please do not hesitate to contact my office at 302-651-5930.

Thank you for your time and consideration.

Sincerely,

Chief of Division of Neurology

SJF/hgs

EEG is finally over!

2012-09-27T16:38:00.001-07:00

that was the longest 48 hours Chuck and I have ever had...he was nice enough to sleep during the day and let me sleep at night! Our 5 day vacation earlier in the month seemed like 2 days and this 2 days felt like at least 5!
I think she showed off a lot. She had a few of what we know are seizures. We clicked a button everytime she had a seizure, or we thought she did. There appeared to be a lot of activity. The EEG tech only told me that she got a lot of info for the dr to go over. She wouldn't tell me more although I think she knows. Hannah wasn't even hooked up an hour and already slipped the gauze off her head! So they had to come and re wrap it.


Hannah all hooked up, had to add the bow to keep up her reputation! LOL

The bow ended up holding back the piece of gauze by her face. This morning she got really hyper and started pulling off the gauze, I think she was ready for it to be done! She was so hyper she pulled on the vent and her trach came out. Not sure why she was so hyper but will be interesting to see if that is a seizure.
We had to wait for neuro to come see us after they took it all off. He didn't come for 2 hours, walked in introduced himself, asked what we had done, wanted to know if we kept a log, no, we were told we didn't need to. He said you should hear in about a month. didn't even look at Hannah and walked out. Needless to say, we were all upset! The attending dr couldn't believe it. We finally got out of there about 1:30!
As usual, we saw a lot of friends and met some new ones among the staff but didn't get to meet any one else since we were stuck in the room. WE did get to walk the halls for about 1/2 hour while she changed out the machine.


all done, waiting to get her hair washed!

We had to buy the button down shirts since that isn't her normal style. They couldn't take anything over her head once she was hooked up.