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Baby T's Story, Chapter 20- A year after Infant Botulism




Over a year ago Baby T’s journey with Infant Botulism began.
IB Dad and I often remark how it feels even further away now
because our baby has evolved into a busy boy-toddler.
 
                  
 
 
 The more he blossoms, the further away the memory of his battle with IB becomes.
I try not to dwell in the worry of being a parent as it’s very easy to become consumed with the past.
I’ve found that many parents have their own emotional challenges to overcome
after witnessing what IB does to their child.
 
 
Knocked down temporarily
 
When your child is in the thick of it, you feel as though things will never get back to normal.
The worry that your baby will be forever changed or effected negatively it tangible and hard to shake. 
But, it does get better. Babies are amazing and resilient.

Being a toddler is exhausting !

 IB is awful, but a year later our perspective is more of luck and gratitude.
Luck being, IB is treatable, and the survival rate is high.
Gratitude for BabyBIG, and the support of the IBTPP
as well as the many friends and family we have who supported us and continue to do so.
 
 
Our infant son, Baby T, became critically ill at 7 months old.
A year later he’s a walking, talking, falling, eating, nursing, on the go,
inquisitive, smart, loving, completely normal and stubborn toddler. 
 
 
 
He has no idea what happened a year ago,
he’s too busy being focused on the joys of today.





Baby Gianni's Story~ February 2012

Baby Gianni's mother Rachael remembers his experience with infant botulism:

When our son, Gianni, was five weeks old, he became critically ill with Infant Botulism.
The morning of February 15th, 2012, Gianni was unable to suck on his bottle.
I could tell he was hungry, but I didn't know why he could not suck. I called his doctor immediately.
 
The best way I could describe his symptom to the physicians office was
that it was almost like he "forgot how to suck".
The doctor wasn't exactly sure what was wrong,
but knew it was something serious.
He had us sent in a Medical Response Team ambulance to Akron Children's Hospital,
which was about an hour and a half away from our home in Pennsylvania.
 
The doctors were considering several illnesses in Gianni's case, 
so he had numerous tests done while he was in the hospital. 
They performed urine tests, blood tests, several MRI's and CT scans, three spinal taps, a test on the muscles called Electromyography, and an EEG scan on the brain.
A majority of the test were coming back negative, yet Gianni was becoming weaker and weaker,
to the point of not being able to move what so ever.
 
The second night in Akron Children's was the worst.
We were standing next to Gianni's bed as the neurologist came in to check him out.
As he scooted Gianni upward, 
Gianni quit breathing.
He was so weak that he could not hold his own airway open.
The nurse hit the "staff assist" button, and within seconds,
the room was filled with doctors and nurses.
That was the worst thing I've ever seen. I was crying hysterically.
Luckily the nurses used a bag valve mask to help save him.
The doctors asked us to take a walk for a little bit while they intubated him.
 
Gianni intubated at Akron Children's



 
The hospital began doing another test to check for Infant Botulism.
But unfortunately, the test needed a specific amount of stool to be collected and sent away,
and another symptom of Botulism is constipation,
so it was going to take some time before we would know for sure.
But as Akron Children's Doctors communicated with the California Department of Public Health Infant Botulism Treatment and Prevention Program they there were certain,
without needing test results, that Gianni had Infant Botulism.
So over-night a medicine called Baby Big was flown over from California to Ohio.
The medicine was immediately given to Gianni.
 
 
Within days, it seemed Gianni was slowly making progress.
He would slowly lift a finger or budge his leg. When I would get really sad and feeling helpless,
I would go over to him and tickle his foot because he would move his toes.
It gave me hope that he was going to get better.
 
Gianni was intubated for about three weeks.
Shortly after he was extubated, we got to leave the ICU.
And about that same time was when test results came back stating that
he did, in fact, have Infant Botulism.
 
 
Baby Gianni extubated and approx. 8 weeks old
 
 
I was adamant that the doctors to unplug his NG feeding tube, so that he would get hungry allowing me to feed him with a bottle to see how well his sucking ability was progressing.
I hoping he would be able to come home without the NG tube.
After much stressing to the doctors, they finally gave in and quit feeding through the NG.
And Gianni did amazing with his bottle!
 
When we left the hospital in March, Gianni was good as new.
 
 
Baby Gianni at approx. 4 months old
 
 
 
We will probably never know how he got Infant Botulism,
but all we DO know is that he's such a happy, healthy baby now.
 
 
Gianni at 1 year old (nearing one year post-IB)!

One year later, a Mother Remembers..

When I was creating the infant botulism blog and requesting stories from other families, I received an e-mail from Cherie G. containing a letter she had written to her daughter, Ayden, when she had contracted IB in November 2011.
Now one year after Ayden's diagnosis, she has written an update which I think will speak to all parents of children who have survived IB. Thank you Cherie for sharing once more!

"One year ago, I experienced the most earth-shattering event
and was introduced to a disease I didn’t even know existed. 
 
Although I have the most beautiful, HEALTHY daughter anyone could ask for, I have found that the healing process is quite unique. 
Not the physical healing, although that came with its own challenges,
but the emotional process. 
 
Not a day goes by that I don’t think about Ayden’s illness. 
 
Not one minute goes by that I am not overwhelmed with gratitude
for her health and for the prayers that embraced our family. 
 
I am appreciative to the doctors who devoted their careers to studying in California about Botulism and indebted to every professional that was involved in her case. 
 
I am humbled by other stories and families
who have gone through this. 
I am in awe of the support that pours out to this day.
I am connected to those mothers in a way I cannot explain. 
I feel their devotion, their fear, and most of all their love.
 
I am thankful for those who allow me to talk about it from time to time,
and those who hear about it often. 
Although I didn’t suffer the loss of a child,
much of the grieving process is still the same. 
 
I have good days and days that are filled with the “what if’s”. 
In some way or another I have experienced guilt, denial,
bargaining, depression, anger and now acceptance. 
I have accepted that this was a chapter
in our lives that while not desired,
brought Michael and I closer together, reshaped our faith,
and reaffirmed that our love knows no end for our daughter. 
We saw how those who loved us reached out to us and how people we had never met loved our child. 
 
I cannot erase from my mind the picture of a 5 month old,
lifeless baby strapped to a gurney being put into a jet. 
I cannot erase the beeping machines and
the sleep deprived hours in the dark,
watching neon letters scroll across screens. 
 
Time and support have healed so much
and we are beyond thankful to have our daughter with us. 
It’s a good and healthy reminder that life is precious. 
 
 
 
 
Ayden is precious. The meaning of Ayden is "fire” or “little fire”. 
She truly is our little fire! She is precocious and full of life! 
We still love looking at her, the same way we did
for hours when she was new. 
Not a day goes by that we don’t look at each other
 with a huge smile and say,
“did you see that?” 
I know that we will always feel this much joy
and excitement in raising Ayden! 
We will never stop getting excited about who she is
and what she does. 
She is the fire in our hearts. 
 
Today, we celebrate one year of health
and the year of healing that has taken place. 
We are thankful to those who have had Ayden on your hearts
and are so blessed by our blue-eyed, crazy curls, wild-child!"

Baby Colin's Photo Collage

 
One year ago (October 2011) Baby Colin was diagnosed with IB.
 
His mother, Kat documented his journey with photos* and wished to share it.

Baby Colin was 10 weeks old when he contracted infant botulism
.
 
Kat states:     
"He was so weak I couldn't picture him ever walking,
but I would see pictures of the other babies and it gave me hope." 
 
(Click photo to enlarge)
 
 
Colin is a healthy happy +1 year old now!

Thank you for sharing your collage with us Kat.
 
 
*these photos were posted with Kat's permission,
please do NOT use any photos without permission.


Baby T's Story, Chapter 19- Recovery Pt. 3-Six months later...

8/14/12

What has Baby T been up to?

ALOT actually....

The big guy turned one last month.


We had a low-key celebration due to his tendency to get a bit antsy around big crowds.
I included honey sticks in the favor bags for the young guests (all were over 1 yr of course).
He received (and tasted) a birthday card from the
Infant Botulism Treatment and Prevention Program (thanks IBTPP Staff)


A rare (and tasty) card indeed!

Next week will mark the six month anniversary of Baby T being diagnosed with infant botulism.

IB Dad and I often remark on how "long ago" T's hospitalization feels.
Since our last update in April, there have only been 6 appointments!

Less appointments mean more time to enjoy summer.



Hanging out with sister

We took a family vacation, Baby T's first long car trip.



"Point and wait for explanation"

We visited the beach and he got sand in every nook and cranny.


Our summer has included a myriad of good times
though we're mainly celebrating our excellent health!

Baby T is morphing into a boy-toddler right before our eyes.
He is more determined to get into mischief and
is NOT easily distracted/redirected when he has a goal in mind.
He can go from cuddling to yanking our hair/pinching 
then back to cuddling; all within one breath.
We love how mischievous he has become.




Ironically, I ran into the ER dr who was stumped by T when we initially brought him in. He was happy to see our guy doing so well. He confessed that he was keeping tabs on him throughout his hospitalization and exclaimed how  Baby T's case has since been discussed often within the medical community.  He clarified that he wasn't pondering discharging us (as I had previously thought) but was genuinely stumped as to what was occurring with Baby T (but was certain it was not looking very good).  He expressed gratitude for the PICU staff who had an inkling that they were dealing with Infant Botulism in this instance.



Baby T saw his neurologist in May and she was impressed with his progress and doesn't need to see him again until he is walking (or 18 months, whichever comes first).


At his 1 year check up, T's pediatrician was happy to see how well he has recovered.

"I thought these bracelets were a thing of the past! Get it OFF"


We troubleshooted some ways to help T's constipation (which can last for a full year after diagnosis).
His weight gain stabilized after some minor losses
(as his pediatrician so eloquently stated, "he is no wilting flower")
Baby T continues to nurse frequently and dabbles in solid foods
but doesn't seem terribly interested in eating solids very often.


 Today Baby T stunned his physical therapist!
Not only is he crawling like a champ now...
He is on the VERGE of walking!!


"Look out world, here I come!"

He really turned on the charm for PT and while she sure does
love to see Baby T, she doesn't need to see us for 6 weeks!

There are times when I wrestle emotionally with what happened to him.
In communicating with other 'IB Moms' I've often been warned
of feeling these emotional aftershocks for some time.
The hand sanitizer at his dr's office takes me back to the days where
I was required to wash my hands even if just to caress his cheek.
I donated the frozen breastmilk that was pumped during his hospitalization
and while doing an inventory of the stash, certain dates took me back to the PICU pump room.
The sessions where: stress would zap my supply, in the early morning where I'd be exhausted but then shocked into reality and have trouble leaving his side, and when I would rush through in order to return to him as the paralysis wore off and his smiles returned.


I'm so grateful that he won't remember everything that he went through.

His bright eyes have always seemed to be reassuring me that everything is going to be just fine.
It feels so good to move beyond his first year.


And what an amazing year it was.
 








A message from an infant botulism mother..

Below is a message written by Jenny,
who's daughter, Allison, recently contracted
infant botulism at the age of 2 1/2 months.


It is so unlikely that your baby would ever get Infant Botulism, but I feel the need to pass along info on the early signs and symptoms since undiagnosed Infant Botulism has been linked to SIDS.
It's scary to think that up to 15% of SIDS deaths could be undiagnosed Infant Botulism.
Know the signs and symptoms of this scary illness to save a life. 
 
They always say never feed infants honey until they are over
the age of one because of Botulism poisoning.
 Botulism is also a spore that lives in the soil, and is very common in California.
When the dirt is disturbed through farming, or construction,
the spores become airborne and are ingested by the infant.
If their intestines have the perfect environment, the spores colonize releasing a toxin.
The toxin paralyzes the infant’s muscles to move,
but most importantly the muscles used to breathe, so without intervention, they just stop breathing.


Acute symptoms can come on very quickly as in a matter of hours or can be as long as days or weeks. We barely had three days from the time I knew something was wrong
until a pediatrician was able to diagnose the illness and rush our daughter to Lucile Packard Hospital.


I hope this doesn’t add to the list of things to worry about,
as this was never on our list, (but SIDS was), and IB is so rare,
but it’s so important to know the early signs to potentially save a life.



The intention is to create awareness and spread the word to any family
that has an infant under the age of one.
This is an illness that I believe goes undiagnosed, until it's too late.


The Infant Botulism and Treatment Program is an amazing organization
that helped save our daughter's life.
I'm so grateful, and now determined to share our story to help other
families recognize the symptoms early.




To me, our daughter never seemed sick, she just started not being able to do
normal 2 1/2 month old baby stuff, like hold up her head, or nurse...
she always seemed to get frustrated and gag while trying to nurse.
She never had a fever, runny nose, congestion, or a cough.
She was constipated, very gassy, had a weak cry, and seemed very sleepy.
A day later she was not able to move her arms or legs, and as the day wore on,
 I was increasingly worried about her shallow, quiet breaths.
By the time the ambulance came she could not open her eyes…
she was almost completely paralyzed.


 It always felt like a race against time to figure out what was wrong with her.
 We spent 7 days in the PICU, 3 days in General Pediatrics, and 9 days with a feeding tube at home.

Thank goodness she was diagnosed early enough to receive the BabyBIG
and, in time, will make a full recovery.
I can say we are happily moving forward.
Thank you to the IBTPP… we will be forever grateful for the good work
you do in saving children's lives and educating the public to keep our babies safe.

Written By Jenny M.

Baby Ayden's Story- November 2011

Baby Ayden Gasbar was 5 1/2 months old when she contracted Infant Botulism. Now she is a healthy and happy baby who just celebrated her first birthday this month!

Below is a letter her mother (Cherie Gasbar) wrote while Ayden was hospitalized with Infant Botulism last November.



My Sweet Girl,
Today is the first day I am thinking clearly enough to write this. Today is Friday, November 11, 2011. 

Saturday, November 5, 2011 we took you to Quincy to pick apples from an orchard with some friends.  You were your usual, lively, self and enjoyed roaming around with us.  We bundled you up and walked throughout the orchard. We went home later that day and went to a birthday party at our friend's home.  You loved being around all the other kids and had a great time. 

Sunday, November 6, 2011 we were at home.  You seemed fussy and had been acting like you were teething.  You just weren’t yourself.  You are never a fussy baby so this was different for you.  Mommy went to work from 12 to 5 p.m. Sunday and you and daddy hungout at home, watched football and napped.  Daddy said you were still fussy and he held you a lot of the day. 
We went to Grandpa Kevin’s house for dinner around 6 that evening and you seemed to enjoy yourself.  You enjoyed being held by everyone and were standing on their laps, laughing, and smiling like usual.  
We went home around 9 and went to bed.  You and I were up a lot that night and you were increasingly unhappy. 
When we got up in the morning I went to the store and purchased baby Ibuprofen to see if that would help your teething.  I gave you the first dose around 8 a.m. and again at 3 p.m.  You began shrugging your shoulders and not supporting your head when I would lift you and I thought you were becoming exhausted.  Daddy could not come home soon enough to help.  You were becoming inconsolable. 
I tried everything I could think of throughout the day to help you.  I gave you a bath, which you normally love. I gave you cold teething rings, frozen squash in a mesh teether, rocked and rocked, nursed, went for a walk, etc. I felt like I had tried everything. I called Grandma Deborah throughout the day to see if she had any suggestions.  She got off work and came down to the house around 7 p.m.  She was going to try to comfort you so that I could sleep some since we had nearly been up for 24 hours. The only thing that would make you stop crying for a few seconds was humming and bouncing. You were still inconsolable and miserable. 
I asked Daddy if he thought we should take you to the doctor. We were beginning to think this was more than teething and that you possibly had an ear infection. All three of us went back and forth about taking you because it was passed hours and it would be an emergency room visit.  We thought maybe if you got a good night sleep we could go in the morning. 

After a few more minutes we swaddled you up in the car seat and left for Central Washington Hospital.  We walked in…it was dark and quiet. We were quickly admitted and you continued to cry throughout all of it.  Your cry was weak sounding and not very loud.  The nurse came in and weighed you and checked some of your vital signs.  The ER doctor on call came in to look at you and checked your eyes, ears, and throat and said everything looked good. This was not teething and not and ear infection.  He said we needed to have a catheter put in to get urine in order to check for a urinary tract infection. 
I broke down at this point. Daddy stayed with you in the room and grandma and I waited outside the room.  The urine was taken to the lab and came back clear.  The next test was a blood draw to check for infection.  Again, this test came back clear. The on-call pediatrician came in and re-examed you to make sure both doctors agreed before moving forward.  They thought maybe a rare disorder where the small bowel moves into the larger bowl may have occurred.  They did an ultrasound of your stomach.  The ultrasound tech and both doctors felt confident that the results looked normal.  They sent the results away to be looked at by another doctor.  They then ordered that a barium enema be done to inject dye throughout your intestines to ensure there was no blockage.  I stood next to you the entire time and you were so strong.  You had been crying this entire time.  The lights and machines were enough of a distraction at times to make you stop for a couple minutes. The doctors told us there was a 50/50 chance that this test could come back positive. If it did, we would be airlifted to Seattle Children’s Hospital to undergo emergency surgery. 
I became physically ill and was shaking. I couldn’t get warm and made several trips to the restroom. This test came back negative.  Praise the Lord.  The doctor then ordered a CAT scan to check for neurological failure. The scan came back clean. Again, Praise the Lord.  Dr. Cook and Dr. Eisert then thought this was some kind of metabolic issue or a very rare disease called infant botulism. 
I was asked a series of question during the time we were in the ER. If I had given you honey, dropped you, hit your head, if you had fallen, etc. I have done everything I can to be the best mom to you and these questions tore me apart. 
We were taken up to a hospital room in the pediatric unit where they would watch your vital signs throughout the night and provide fluid and glucose. You had an IV placed in your little arm that evening. We slept together in the hospital bed so I could be as close as possible.  You slept on and off but whimpered throughout the entire night. 


Grandpa came by early the next morning to check on us before he flew out to Portland for work.  We were still trying to figure out what was going on. He needed to leave shortly after coming and I broke down crying. I really needed the support and he agreed to cancel his trip. Shortly after that, Grandma came to the hospital along with Grandma and Grandpa Gasbar.  Everyone was very worried. 
The doctors watched you throughout the day but you continued to get worse. You could no longer hold your head up at all. Dr. Cook came back after talking with several other doctorsand said he felt 80-90 percent confident this was infant botulism. He said Wenatchee did not have appropriate medical support to deal with this disease and that he recommended we be airlifted to Seattle Children’s Hospital where we could receive expert care. Daddy told him to make the phone call as soon as possible. 

Within a short amount of time we were transported to an ambulance. Grandma Gasbar and Daddy got in the car and headed for Seattle. There wasn’t enough room on the plane for anyone but us, two pilots, and two wonderful women who were from Children’s Hospital.  They put you on a stretcher and strapped you down. Your little body looked so small. It didn’t look right. There was nothing I could do to protect you and I collapsed to the floor after Dr. Cook left the room. You were taken to the ambulance and we went to Pangborn airport. It was so hard to leave everyone else knowing that it was just you and I. 
We drove to the airport without any lights or sirens which made the drive feel like forever.  The ambulance driver was kind.  He kept looking over and checking on me. I could look back and see the top of your head from the front seat. We arrived at Pangborn and went through a private gate to the jet. 
They got me out of the plane and had me stand off to the side. A man came over and handed me a bottle of water and a piece of gum. He gave you a teddy bear and wrapped his arm around me.  He told me not to worry; we were going to be taken care of. They took you out of the ambulance and we boarded the plane. I feel like I was on auto pilot as they told me different things to do and where to go. Once we were in the air I kept looking to the flight nurses for reassurance that you were okay. I could see your chest rise and fall and this is what I used to see that you were safe. The nurses would signal to me to tell me you were doing well or if you had your eyes open or shut. We reached Seattle in about 30 minutes and were taken off the plane at Boeing Airport. We were transported in another ambulance to Children’s Hospital. I remember clinging to the teddy bear and my cell phone. Daddy sent me a message saying they were close. 
We got the hospital quickly and came through the emergency doors. People were at the doors when we arrived briefing the crew and asking questions. I walked beside your stretcher telling you I loved you and that you were going to be safe. We went into a small room where there was a chair for me to sit in. The nurses were worried because I was shaking. You were awake and crying. Several people came in and out of the room, asking questions and getting supplies to make sure you were stable. A nice, young, nurse came into the room and asked the same questions I had already answered before. Had I hit or shaken you?  Do we feel safe at home?  Have I ever dropped you or given you poison? A neurologist came into the room and began talking about CAT scans and neurological damage. 
Daddy walked into the room, thank God. I felt so alone trying to take care of you. I burst into tears again and hugged daddy for a long time. The nurse brought a warm blanket and told me to climb into the bed with you. I laid there with you close to my body, still not knowing what was wrong and if it was getting worse by the minute. 
Teams came and went, people introduced themselves and left. Papers and release forms that gave the doctors permission to treat you needed to be signed.  I felt like I was sitting there as people ran around, almost like things were in slow motion. At this point I had been awake for about 2 days straight. I was trying to tell the doctors detail by detail to ensure they knew everything that had happened, what we had done, and where we had been. We were there for a few hours and you began to fall asleep. I snuggled you close and tried to relax. My muscles were tight after being flexed for so long and all of the shaking. The nurses brought in crackers and drinks although there was no way I could eat, I tried. After what felt like forever, we were taken to our room. 
We were supposed to be transported to the Intensive Care Unit but they said they would like for us to be in an Isolation room and move if necessary. At this point they were also diagnosing you with Infant Botulism. Second floor, room 2140, isolation status. Nurses still flooded in and out asking the same questions as before.  I had been awake for days and the details became harder and harder to retrieve from my memory.  I had to keep looking to others to help me fill in the blanks. You were hooked up to several monitors and had the same IV from Wenatchee. 
We slept for a couple of hours that night as doctors and nurses checked you every few minutes.  The biggest fear is that this disease would take over your respiratory system and we would need to use a ventilator to help you breath. Thank you Lord for your protection! It was so hard to sleep so I lay in bed watching your chest rise and fall. Daddy and I prayed with you every night and asked for your healing and protection. 

Each day was a little bit different. Your main team of doctors did rounds each morning that we were involved in. They talked about the day before, the diagnosis, treatment, and prevention. It was reassuring to listen to them talk. There is only one place in the entire world that treats Infant Botulism and has developed an antitoxin that neutralizes the toxins taking over the body. California’s treatment center had been notified the night we came here and they flew the BABYBIG treatment the following morning.  The treatment was a two hour infusion. We watched you closely for two hours to make sure your body didn’t react negatively. Everything seemed to go well and the doctors continued to monitor you closely.  They were still taking your glucose levels by pricking your heal and toes. They were also taking blood draws to see the levels of gases being emitted into your blood and the PH levels.  You were so weak you could barely cry when they took blood. Your facial expression showed you were crying but hardly any sound came out.  It was so hard to know you were hurting.  I would lay my head close to yours and hold your hand as your tears hit my face.  You were responding well to treatment at this point. 

Within the next few days following you started to regain strength in your hands and legs. I bent down to pick something up and when I noticed you were watching me, I said “boo”.  You smiled. It was the most beautiful smile in the world. It looked like the kind of smile you have after visiting the dentist. Only part of your face went up, but oh God, was it beautiful.  We knew at this point that you were interacting with us and the treatment was working. 

You continued to make great progress each day! The doctors were very impressed and said they hadn’t seen a baby with Infant Botulism progress so quickly. Although your tests were still coming back negative, the doctors were confident they were treating the right condition. 

Thee glucose screenings continued to come back showing stability. We continued tube feeding you with pumped breast milk. You were on a “nothing by mouth” status for several days. Mommy pumped milk 8-10 times per day to ensure you had what you needed to heal.  This was very difficult to make sure I was eating and drinking enough to produce enough milk for each feeding.  You were taken off of a continuous drip to a bolus feed every couple of hours in larger amounts.  Mommy and daddy took over feeding you through the tube and were taught how to use all of the equipment. After several days of nothing by mouth we were cleared to try breast feeding. You refused the breast for a couple of days, so we were using bottles to help retrain the suck and swallow reflexes. The doctors ordered a swallow test on Tuesday, November 15, 2011. They said you did wonderful and that you are protecting your airways “beautifully.” 
We were cleared to try nursing or bottle feeding you before each tube feeding to see how much you could take orally. You are still weak but trying so hard during the physical therapy exercises. You get frustrated not being able to do what you could normally do and we can really see your independence showing through. 

Several nights you have wanted someone just standing over your crib while you try to go to sleep. Daddy and I have spent several hours just standing there, running our hands through your hair, and touching the bridge of your nose. I would stand as long as it took just to give you a tiny bit of comfort. You have been so brave! 

Doctors have been discussing discharge within the next couple of days. You have had several visitors who have come to see you and give their love. Mommy and daddy haven’t left the hospital and the furthest we have gone is the cafeteria.  Grandma Deborah went to the emergency room with us and then came to Seattle the next day and stayed for several days.  Grandma Sue has stayed the duration and is coming back and forth from Great Aunt JoAnn’s condo. Grandpa Kevin and Jennifer and Grandpa Dennis drove over for a visit too.  Shannon and TJ came several days and some of the Gasbar side came over and brought food. We have had a lot of support from family and friends. 

The doctors have decided that we will go home Thursday, November 17th, 2011. Doctors are setting up care in Wenatchee so we can have people do therapy at our house until you are back to normal. You are doing so great and smiling at people when they come in the room.  The doctors enjoy coming to see you and they all talk about how cute you are! Everyone has been so kind. Mommy cried today while thanking Dr. Dane for his love and care over you.  We were told how wonderful everyone here would be but they have gone above and beyond to take care of all of us. 

You are a miracle my sweet love. We treasure you dearly and thank the Lord for his protection.  I know one day you will read this and know that you were sick. I don’t know if you will ever know just how bad it was. I hope that you will know how many people were there to support you, how many people love you, and how many prayers were sent up for you. I hope you trust the Lord to take care of you and know that your Mommy and Daddy love you so very much. 

This has been the hardest thing I have ever been through and you, my love, are a miracle!