March 31, 2011 9:37pm

They lowered haileys vent to 11. Respiratory said he'll lower it to 10 by the morning if she does well. Then they stick at 10 and then make the time greater where the machine gives her a breath.

He said the mode she is on now is basically cpap

March 31, 2011 6:36pm

Hailey did a nif test tonight and ROCKED it! The needle was between 40 and 60 the three times she inhaled. Then she let her rest a minute and did it again and she hardly looked like she was breathing and did 20. We think she wasn't sure she was supposed to do it again

Hopefully they ignore that last reading Hailey! You ROCK girl!

March 31, 2011 12:26pm

Got my generic answer when I asked how much longer Hailey will need her breathing treatments. "she's so weak so until she gets stronger" I'm beginning to think she's going to have to be running a marathon to get out of here!

Physical therapy brought a cool looking chair (looks like a car seat). After working out her joints and muscles they moved hailey to the chair sitting on her bed. She is now sitting in it watching Tangled. Even with all the tubes and wires she looks good in that chair!

March 30, 2011 10:07pm

Jen didn't respond to my texts asking how the rest of Hailey's day/night went, so I'm just gonna post more pics :P

Hailey's Plasmapheresis machine! Looks like something you'd see next to Frankenstein! 

All those tubes and wires carry her blood from her body, clean it out, and then put it back in her body.


Some balloons and just a few of the MANY stuffed animals Hailey has gotten.

The thing that made me the "best Aunt ever"

Can't wait to hear her doing this again...

Hailey Singing "Beat It"

:)

March 30, 2011 2:22pm

Hailey is receiving her 4th Plasmapheresis treatment right now.  She has one more treatment left before the doctors "re-evaluate, and see where she's at."

She's gotten so many cards and get well notes!  The back wall of her bed is covered! We're gonna have to start hanging them from the ceiling!

Lucky girl ;)

March 30, 2011 8:46am

They figured out what the breathing thing was last night. Something about having sooo many secretions that needed to be suctioned out of her tube that it was basically echoing back in her tube and the machine was counting it as a breath. Once they suctioned her real good everything was back to "normal". So it was nothing with Haileys breathing...just from her now productive coughing! A good sign!

March 29, 2011 9:56pm

Hailey had a pretty good day today!  Her PT and OT therapists came to see her today and worked with Hailey's arms and legs.  Lots for me to update today though!

Hailey wiggles her fingers really well!  She shrugs her shoulders, and not only wiggles her toes but moves her whole foot while doing so!  I even saw her knee jump a time or two when she was wiggling those feet!  She gives a small smile and has a nice strong cough.  They are suctioning her a lot because of her cough and getting a good amount up while doing so!  She's moving her head and is wide awake and answering with a strong nod or shake of the head.

Don't get me wrong, there is still a LONG way to go.  But these are steps in the right direction!  She's making improvements!! 

She has her days and nights mixed up and they are trying to straighten that out by keeping her up for most of the day today.  Keeping the room nice and bright and interacting with her to help her sleep good tonight.

One of Hailey's preschool teachers came by to see her tonight.  When she showed up Hailey's eyes opened SO wide and her whole face lit up!  Hailey knew exactly who she was and was so happy to see her!  She brought Hailey a cute "Hershey kiss" that the kids at school made for her.  It was so nice and Hailey loved the visit.

Hailey's respiratory rate is all wacky tonight.  Her O2 sats and vitals are nice and stable, but her breathing is weird.  She's taking these short shallow breaths and the machine is counting her rate as anywhere between 70 and 108 breaths a minute.  That is setting off the alarms on the ventilator.  They took some blood to check her blood gas levels and for right now are keeping an eye on it.  I guess we'll see what her vent settings are like in the morning.  They didn't seem to concerned about it since her vitals and everything look ok.

Tomorrow is another plasmapheresis treatment. Looking forward to seeing some more movement from Hailey and more progress!  Hopefully we can get off the ventilator at some point this week and maybe even get some talk about rehabilitation placement.  Praying this respiratory rate is just a fluke and nothing to be concerned about.

March 29, 2011 10:13am

Hailey had a good night after the late scheduled plasma. She watched Dora most of the evening. She's still moving her fingers, and this morning wiggled a couple toes on her left foot! This was her weakest extremity so we're excited!
They dropped her O2 to 30% and that number that was at 17 yesterday this morning is at 15.
The respiratory therapist yesterday said that goes to 5 for extubation but the Dr last night said it didn't have to. Another example if different stories from different people :/
No plasmapheresis today.

March 28, 2011 10:55pm

Hailey received another plasmapheresis treatment today. No changes otherwise. Hoping to see some improvement after 3 treatments now. *fingers crossed*

March 28, 2011 11:01am

They have turned Hailey's vent settings down again.  They have said her volumes arent high enough to take her off the vent and even if they were they need to wean her slowly so her lungs don't collapse. She's been on the ventilator a week and a half now and Jen and Dave just really want to hear her voice again.

The nurse practitioner has made a case for NOT doing the PICC line by saying the ones Hailey has now have been good and she thinks if they do need to do another IV they could get another vein so it isn't a neccessity right now.  Of course that could change, but they think they could do without it for now.

Hailey also moved 4 fingers on her hand this morning!  When asked to raise her arm she wasn't able to, but she did wiggle her fingers.

Another plasmapherisis treatment today at some point.

Please pray for some progress in the breathing area so we can get Hailey off this ventilator!

March 27, 2011 9:09pm

So today has been a roller coaster of up and down emotions.  First the PICC line, Hailey's trying to talk, but can't because of the breathing tube and that is very tough and heartbreaking.  She's more alert and aware of things going on and Jenn was saying that Hailey is getting mad during her breathing treatments now and her blood pressure is going up and her face is turning red.  Besides smiling today, Hailey also wiggled her middle finger!  They called the nurse in to be a "witness" also!

Keep fighting Hailey! Slow and steady wins the race!

March 27, 2011 5:53pm

When asked to smile the corners of Hailey's mouth now turn up just the smallest bit.

Baby steps...small victories.

March 27, 2011 9:54am

As much as I hate coming here and saying "Hailey is the same and there's been no change." in the other sense I want to be thankful that she's remained stable and hasn't regressed.

Last night was another uneventful, stable night. No real changes. They're performing another nif test this morning (how strong her inhales are) and she'll continue with breathing treatments.

I'm ready for some positive changes! Come on Hailey!

March 26, 2011 10:36pm

Today was a stable, uneventful day!  We'll take it!  As I said in the previous post Hailey's ventilator has been changed.  It's now a bi-level ventilator which allows her to spontaneously breathe on her own while also giving her breaths when needed.  The ventilator is giving her 11 breaths.  Hailey is doing the rest of the breathing on her own! Her eyes are open nice and wide when she's awake and she's nodding and shaking her head softly in response to questions.

She is still getting the breathing treatments and her lungs still sound good.

Hailey will continue with the breathing treatments tomorrow and will resume the plasmapherisis on Monday.  We're grateful for the stable days and are praying for some movement in Hailey's extremeties soon.  We want her off the ventilator and back to her old self :(

March 26, 2011 9:56am

A little bit of positive news. Hailey can do some weak coughs on her own and can shrug her shoulders some now! She's also begun to breathe over the vent settings again! (You can see on the machine when she is initiating a breath and not the machine) and we're seeing her breathing on almost every breath now!

March 26, 2011 8:54am

No real changes for Hailey this morning.  They had to place yet another IV last night.  No plasmapheresis treatments this weekend, just the breathing treatments for the atlactasis.

Please pray that we start to see some kind of movement from Hailey's extremeties.  Let us know that this thing is starting to reverse itself and the treatments are working.

March 25, 2011 7:45pm

Hailey had a pretty good day! Treatment went well, her blood pressure didn't drop this time during treatment and her heartrate has been pretty normal all day.

This afternoon/evening has been a little bumpy. They turned Hailey and her O2 sats dropped and they had a hard time getting them to rebound. They had to turn up her ventilator settings again to deal with the drop in O2 sats. They've also talked about inserting a PIC line. Poor Hailey has been poked enough!

Pray for them to be able to not have to do a PIC line and for a stable night for Hailey. Hailey will not get treatments this weekend so hopefully she can rest!

Auction for Hailey!

There is an auction happening right now and proceeds will be donated to Hailey and her family to help with costs associated with her hospital stay. 

Please take a look at the items in this album:

AUCTION FOR HAILEY

and see if there's something there you just can't live without!  Lots of gorgeous things from lots of wonderful people!

March 25, 2011 1:02pm

2nd treatment went great and her lungs are sounding better too!

March 25, 2011 10:54am

Hailey's heartrate has been in the high 120's to mid 130's this morning!! They also did the blood test to see if they can continue with another plasmapherisis treatment today. They need a count of 200,000 to do treatments and after a treatment the count can drop to 50,000. Well Hailey's levels came back at 400,000!! Her second treatment is being started now!!

Pray for the continuation of progress today! So far it's been a great morning!

March 25, 2011 8:49am

Hailey had a good night. The night nurse said she gave her an awesome bath and washed her hair. Then put them in pigtails. So cute. Hailey would hate them I'm sure, she hates her hair up, but it sure makes accessing her central line easier without having to untangle all those curls!  They say her chest is sounding a little better.  Seems the IPV treatments (air puff) and the new antibiotic is giving this lung issue the boot!!  Hopefully she gets her 2nd plasmapheresis treatment today.  She's been more alert last night and this morning. Her head nod seems a little stronger.  No movement from her extremities yet though.  Soon I hope!

Scentsy Benefit for Hailey!

Hey Everyone our awesome Scentsy Consultant ScentSational Scents Kathy Bandy has set up a fundraiser in Hailey's name. Please go to her website www.kathybandyscents.scentsy.com and place an order by clicking on Buy from party next to "Benefit for Hailey" Support Jen and Dave and Hailey and get some awesome scentsy too!

100% of the commission from the sale of the scentsy from this benefit will go to Jen, Dave and Hailey!

March 24, 2011 8:41pm

Hailey has had a stable day! They did the plasmapheresis today and Hailey's blood pressure dropped once and they had to pause treatment and push IV fluids.  They then were able to continue treatment and complete it. They believe Hailey has Atlectasis and not pneumonia.  It is similar to pneumonia except it moves around so each time they put Hailey on her left side it moves to her left side and when she's on her right the fluid and stuff is in her right side.

They have her on a machine that basically puts little puffs of air in her lungs, like a fake cough.  We hope along with the stronger antibiotic this will help get rid of the atlectasis.

They will take another blood sample in the morning to check her platelet levels and see if she can tolerate another treatment tomorrow.

Pray for Hailey's blood to replenish the platelets and for the antibiotics and treatments to work on her lungs!

March 24, 2011 1:32pm

Hailey's central line is in. Now we are waiting on the plasmapheresis machine. They will give Hailey a treatment today, another treatment tomorrow and then let her rest over the weekend.

March 24, 2011 12:43pm

While you are praying for Hailey please include her bed mates too. A little girl named Jewel whose parents just got some bad news, and a little boy named Jason who has severe pneumonia. We've all become a family here. Thank you to everyone for your prayers!

March 24,2011 11:37am

Hailey is having her central line placed right now! We've been asked to leave the room. Please pray really hard that everything goes off without a hitch!!

March 24, 2011 10:13am

Hailey had a rough day yesterday and her night was even worse. She had a real bad de-sat and we had to have an arterial line put in. After that was done she recovered nice and has been stable through the entire night. She still has a mild fever but her heart rate is down and her B/P via her Art line is really good. We're still waiting on the doctor so she can have her central line put into her carotid artery. Then the plan is to start the plasmapheresis today. Were hoping the new treatment will be what she needs to be on the upswing. 
The treatments last 10 days and she'll receive a treatment every other day for 10 days. Prayers for no complications during the central line insertion and for the treatment to go well!

March 24, 2011 8:31am

I haven't received an update this morning yet, but I know Hailey goes to have her central line put in this morning.  Please pray that the procedure goes well and there are no complications.  After the procedure Hailey should be able to start the  plasmapheresis.

Donations

Hey Everyone,

At the request of a few people I have added a donation button to the blog to allow people to donate to help Jennifer and David with Expenses while they are at Hailey's bedside and with hospital expenses they will have.  I'm sure they'd appreciate anything donated, but please don't feel obligated to do so!  The money will go directly into Jen's account which only she has access to.  Just click the little "donate" button on the right hand side to donate.

Thanks!

March 23, 2011 10:23pm

They just placed Hailey's arterial line.  She's stable and the dr. is going to try to work her ventilator settings down throughout the night.  She's been fighting a borderline fever all day.  Her xray shows a lot of pneumonia in the left lung.  They are starting her on a different, stronger antibiotic.  Please continue to pray and send good thoughts for Hailey's heart rate to come down tonight and for her breathing to stabilize!

March 23, 2011 9:21pm

Haileys getting an arterial line now and they just ordered an emergency X-ray of her chest. Upped her settings again on the ventilator.

Plasmapheresis

Here is a little bit of information on the procedure that Hailey will be having done within the next couple of days....

Plasmapheresis is a procedure, in which plasma the liquid part of the blood is separated from blood cells by a machine recognized as a cell separator. There are two procedures that are usually used to remove plasma from the blood, on the first method separator spins the blood at high speed to remove the cells from the plasma. In second method the blood pass through a membrane with tiny pores that filters blood cells from plasma. The cells collected in the Plasmapheresis are returned to the Guillain Barre Syndrome patient, although the plasma that includes the antibodies is useless and restored by other fluids. Patients suffering from Guillain Barre Syndrome are kept under strict medication and medical support to keep the blood from clotting, often an anticoagulant is transmitted through veins.

The process of Plasmapheresis takes several hours.. This treatment maybe appears slightly uncomfortable however it’s usually not painful. The need of Plasmapheresis depends upon condition of patient and treatment recommended by neurological surgeon. Although an average time of plasma exchanges is 6-10 treatments within 2-10 weeks. In few Guillain Barre Syndrome centers, Plasmapheresis treatments are done once a week and in other hospitals treatment is done more than one weekly. Usually the patient undergoing plasmapheresis sits in a reclining chair or lie in bed. Catheter a small thin tube is inserted in a large vein, normally on the crook of the arm, and another Catheter is placed in the opposite hand or foot. Initially blood is transferred to the separator from one tube, as the removed blood cells are merged with replacement liquids and returned to the patient via other tube. The quantity of blood outside patient’s body is less than the amount usually donated during blood donation to blood banks. Are there any risks involve in Plasmapheresis? The answer is yes however these risks are easily controlled.

March 23, 2011 5:47pm

After talking with haileys neurologist and talking with someone from the blood bank about the treatment, we've decided we're going to try the other treatment called plasmapheresis. Hailey's Guillain barre is serious and she is also battling a pneumonia now. Keep those prayers coming. Looks like we'll be in the hospital for at least another 2 weeks.

Plasmapheresis involves taking Hailey into the OR and inserting a central line.  They will then hook her up to the machine which will basically remove the blood from her body, clean it, and reinsert it into her again.  The treatment takes 1 hour and she will receive the treatment every other day for 10 days.

This treatment is usually done on adults so the doctors are consulting with the kidney specialists for information on flow rate and everything for children as the treatment is similar to dialysis.

March 23, 2011 2:09pm

They've upped haileys breaths per minute from 20 to 24 after the results of her arterial blood draw came back. The machine is doing most of her breathing today (you can see on the machine when she is the one initiating the breath and not the machine).  Went down to the gift shop crying. They have beautiful things there. Saw a pair if butterfly wings which the ladies gave me for free for hailey. I can't wait until she can wear them.

March 23, 2011 10:51am

Gosh she seems to be getting worse!!  They put lidocane on her wrists so they can do an arterial stick to check for blood gases and they are getting her a vest machine to give her little pats on the back to try and break up the secretions in her chest.

March 23, 2011 10:52am

No change for Hailey this morning. Her CO2 alarm keeps going off. They want to take more blood to check the number accuracy and If it is high she might need more breathing support. It breaks my heart to see her eyes and brain working but otherwise nothing else moves. Not sure what the game plan is now. It's looking more like we might need to try the other treatment.

March 22, 2011 8:45pm

Sorry for ignoring all texts and phone calls today. I just haven't been in a mood to talk. Very emotional today. Don't know why I'm worse today :/

March 22, 2011 4:53pm

I'm having a rough afternoon. The breathing specialist says he's impressed with her breathing. She's awake and can nod yes or no. Watched max and ruby on my phone but then a dr comes in and brings up doing the plasmapheresis again because she's the same but not getting better.

March 22, 2011 11:43am

Hailey took the cpap test and did wonderfully!! The pressure test was a little lower than last night but he said they usually do it at the beginning and they did it at the end this time. Also she has an "uncuffed" ventilator so some of the air she takes in escapes.

March 22, 2011 8:49am

Hailey had her IV placement changed last night. Poor girl now has 1 in her arm and 1 in her foot. Her respiratory specialist said she was good and awake this morning responding to him but then the nurse gave her more morphine which makes her sleep. He wants her awake to do the cpap test and the nurses want her comfortable so it's a fine line to keep her pain free yet able to follow directions for the test.

March 21, 2011 11:59pm

I'm trying to look at being in the Ronald McDonald house as I just left hailey with a babysitter only I feel so far away from her :(

March 21, 2011 8:37pm

Some good news! Hailey took the test to see if she can take another test to see if she can handle a cpap instead of a ventilator and her measurement was actually a little higher than before she went on the ventilator! Now they can give her a CPAP test. She has to make sufficient breath movements on her own for 30 minutes during the test. Keep your fingers crossed tomorrow!!

March 21, 2011 7:07pm

Turned on the firework song for Hailey and she started trying to move her arms and eyes were wide open. Of course I started crying at the line " after the hurricane comes a rainbow"

March 21, 2011 5:23pm

Haileys cold she had before coming in here is kicking into high gear. (test came back positive for rhinovirus along with the gouillain barre) They keep having to suction her and get a bunch of phlegm. When they do this though it causes her O2 numbers to drop so she hasn't been awake and star enough at the same time to do her cpap test yet. Maybe tonight but the dr who does it leaves at 7 so we'll see.

March 21, 2011 1:49pm

There's a nonprofit here that makes welcome baskets for families who will be here a while and they have all sorts of toiletries you might need. Razors, shampoo, toothpaste deodorant, snacks too! They are so great here.

March 24, 2011 10:24am

Hailey is much more responsive this morning. She was opening her eyes a lot was able to nod answers. The nurse had us ask her if she was in pain "Hailey do you hurt?" and hailey nodded her head yes. We were then asking her what hurt? Her stomach and she nodded no. When we said what hurt she lifted her leg (pain is common with the GBS-she'll be on pain meds even after she is out of the hospital.

March 20, 2011 9:23pm

Daves fire department friends came tonight from their firehouse duty to bring us food and to bring Hailey this HUGE stuffed bear and a card signed by everyone! This thing is bigger than her! Can't wait until she can wake up and see it! RVFD FTW! Thanks guys!!!

March 20, 2011 9:23pm

Neurologist came today and did the nerve test. Basically confirmed the diagnosis of "serious goullain barre" from here it's a waiting game to see if she's hit bottom yet. Next step is plateau which could takes weeks or months. Everything with hailey is basically the same

March 20, 2011 7:23am

Hailey has another fever and her blood pressure is low which they said could be from the fever. They are monitoring it for now. Put a feeding tube (ng) in. She's on Zantac now to prevent ulcers. They started an antibiotic and also restarted the immune globin treatment again.

March 20, 2011 1:04am

Hailey had her MRI now we wait for results from that sometime in the morning. She's developed a fever now. They have not hooked her back up to the treatment because one of the side effects is fever which she already has from something now. They are giving her antibiotics just in case it's bacterial but nothing has come out positive yet.

March 19, 2011 10:33pm

 Just had some soup and a cup of coffee. Hailey is down getting her MRI done now. Waiting for the nurse to come get us to let us know she is done and back. She is sedated (more heavily for the MRI) on the ventilator.  Tomorrow's plan is to do a nerve conduction test. Basically to my understanding they give her little shocks to her nerves to see whether its the nerves themselves affected or the outer covering of them. If it is the outer covering, that's another sign pointing to the Guillan Burre diagnosis. At this point, that would be our best outcome...otherwise it would mean its something else which isn't a temporary thing. Will update as I can. Thanks again to everyone for their prayers!!

March 19, 2011 6:16pm

They just put Hailey on a ventilator :(

March 19, 2011 12:57pm

Nothing has happened this morning. We haven't seen the neurologist yet and no tests. Everything is still the same. Hailey finished off her first treatment of meds and is due to start a 2nd one later this afternoon.

March 19, 2011 9:27am

The amount of support we have coming from family, friends (most of who I have never met in person) simply AMAZES me! It means so much and I can feel all of your love and support. Thank you!

March 19, 2011 7:19am

Hailey's been stable all night and is tolerating the meds. Visit with a neurologist sometime today and a sedated MRI breaks my heart when she wakes up crying " I hate this I want to go home" :(

March 19th 2011 3:53am

They've started Hailey on a treatment that has been shown in some studies to help stop further progression of the paralysis. Vitals every 30 min now, and neuro exam every hour. Add in the respiratory therapist doing his thing and we're not getting ANY sleep.

March 18, 2011 10:47pm

Haiiley and I have landed at shock trauma baltimore. No news on the spinal results yet. We're in the pediatric intensive care. Shed being so brave! Hates the nasal canula they have her on though. It's going to be a long night.

March 18, 2011 8:22pm

Spinal went great! Hailey's a champ. Cat scan and bloods are normal. We are waiting on the helicopter and flying to the ICU at univ of md.

March 18, 2011 6:19pm

Cat scan is done still waiting for the spinal tap. Everything is here for it but the doctor

March 18, 2011 12:40pm

We're heading to the hospital here in Hagerstown for testing. Blood work. Cat scan and a spinal tap. Then they will be transporting her to the big specialist hospital. Please pray extra hard for her!!

March 17, 2011 2:51pm

Hailey is so sweet too! One of the doctors asked her the name of her best friend and she said "Hunter and Ryan" (her brothers!)

March 17, 2011 1:35pm

The doctors think Hailey has Guillain Barre Syndrome. We have to keep an eye on her today to keep watch for progression and take her back to the doctor in the morning. Please keep her in your thoughts and prayers that this goes away quickly and without further incidence than she already has. :(

About Guillain Barre Syndrome

Guillain Barre Syndrome is a rare and severe disease. It occurs after an acute infectious procedure. Guillain Barre Syndrome initially affects the peripheral nervous system. Normally it is acute form of paralysis in lower body area that moves towards upper limb and face. Gradually patient loses all his reflexes and goes through a complete body paralysis. Guillain Barre Syndrome is a life threatening disorder and needs timely treatment and supportive care with intravenous immunoglobulins or plasmapheresis.

 The disease initially appears in lower limb and affects the muscle reflexes. Paralysis in lower limb and legs are commonly called rubbery legs or tingling and numbness in legs. Afterwards this syndrome travels in upper part of the limb. Generally in short span of time facial muscles and arms get affected and become completely paralyzed. Normally the lower cranial nerves get damaged and lead to bulbar weakness. It affects the swallowing and breathing resulting in constant drooling. In acute cases of Guillain Barre Syndrome patients complains of temporary Bladder dysfunction. The obvious indication of GBS is pain; it is quite similar to the aching that you get after over exercise or jogging

Generally Guillain Barre Syndrome weakened the muscles and entire body goes through acute paralysis. Often facial nerves get affected, blurred vision and slurred speech are the common signs of this type of paralysis. Numbness or tingling in the feet and hands are also among other obvious sensory symptoms. In other severe cases the muscles of swallowing and breathing get badly damaged. Guillain Barre Syndrome symptoms quickly grow and radically get worse. After that, approximately within 2-4 weeks disease progress usually ends and after 2-4 weeks full functional recovery begins.

Majority of Guillain Barre Syndrome patients regain all their functional muscle recovery within one year. Although there is 3-4% cases that became chronic and patients get severe paralysis affects that wastes their muscles and often lose their lives. Months of intensive physical therapy is essential even if the recovery process seems very slow and futile.

Hailey

Hailey is a bright, intelligent almost 4 year old.  She has 2 older brothers whose names are Hunter and Ryan.  Her mom is Jennifer Clark, she is the owner, designer of Hailey's Hair Clips (which is now in hiatus status due to Hailey's condition) and her dad is David Clark.

Hailey loves all things horses, and also loves her ballet class.  She was in preschool two days a week and loved playing with her friends at school and the "lunch bunch" there too.

On Tuesday March 15th 2011 Hailey started complaining that her "feet felt funny". Her mom noticed that she was falling down a lot while walking.  On Wednesday she took Hailey to the doctor and by Friday they were being brought to University of Maryland Medical Center by helicopter.  Hailey was diagnosed with serious Guillain Barre Syndrome and three other cold virus's.   Hailey is now on a ventilator and has a feeding tube where she is receiving nutrition.

This blog was created as a way to keep everyone updated without her mom having to take time away from Hailey to update everyone.  Please add this blog to your bookmarks or click "follow" on the right hand side to get our updates.  You may leave comments and prayers and words of encouragement also as Hailey's mom and dad will be able to read/see them.

Please sending good thoughts and prayers for Hailey to get better and recover from this syndrome and for her parents to stay strong and be able to handle this journey they are on.