Claire giggles

CLAIRE GIGGLES!!!!!!!! Praise God and enjoy this precious footage.

The Annual MRI

The Annual MRI…
Every year Claire has an MRI to check the development of her brain and to see if there are any changes that may lend an answer to Claire’s condition.  I must admit that if it were up to me, Claire would have had a zillion MRI’s in the first year of her life…I was hurting and confused and wanting answers.  Claire’s last MRI was around 18 months old and in September, 2011.  The result of the 2011 MRI was that Claire’s brain had grown a little, there was some spike in her lactate levels (non-significant), and there was possible Leukodystrophy.  What is Leukodystrophy…here is an excerpt from the National Institute of Neurological Disorders:
“Leukodystrophy refers to progressive degeneration of the white matter of the brain due to imperfect growth or development of the myelin sheath, the fatty covering that acts as an insulator around nerve fiber. Myelin, which lends its color to the white matter of the brain, is a complex substance made up of at least ten different chemicals. The leukodystrophies are a group of disorders that are caused by genetic defects in how myelin produces or metabolizes these chemicals. Each of the leukodystrophies is the result of a defect in the gene that controls one (and only one) of the chemicals. Specific leukodystrophies include metachromatic leukodystrophy, Krabbé disease, adrenoleukodystrophy, Pelizaeus-Merzbacher disease, Canavan disease, Childhood Ataxia with Central Nervous System Hypomyelination or CACH (also known as Vanishing White Matter Disease), Alexander disease, Refsum disease, and cerebrotendinous xanthomatosis. The most common symptom of a leukodystrophy disease is a gradual decline in an infant or child who previously appeared well. Progressive loss may appear in body tone, movements, gait, speech, ability to eat, vision, hearing, and behavior. There is often a slowdown in mental and physical development. Symptoms vary according to the specific type of leukodystrophy, and may be difficult to recognize in the early stages of the disease.”
As you can imagine, I took the time to look up each of the disorders listed in the description, and of course none of them are pleasant or something you “want” your child to have.  Waiting for the 2012 MRI was a test in patience.  Most days I didn’t give it a thought, but on the bad days…well it’s hard to not think about what Claire may or may not have. 
Claire’s MRI was on October, 17, and let me tell you…Claire was having a rough day of seizures and it was scary to step foot into OHSU because I always have a nagging feeling we will never leave once there.  I know that is a silly thing to fear, but after the amount of time we have spent there, and knowing the fragility of Claire it just sometimes consumes my thoughts.  The MRI itself went pretty well.  The anesthesiologist didn’t give Claire quite enough sedation to keep her asleep through the whole test and as Claire started to wake up she had a seizure and they had to repeat the last portion of the MRI, which of course was the longest portion.  Claire mad it to recovery and instead of the sedation giving Claire a break from her seizures, it just caused extra seizures as Claire fought harder to wake up from sedation.  Claire had a seizure in recovery where her oxygen saturation went down to 22 and let me tell you, I thought they were going to admit her.  Thank goodness I got them calmed down and let them know her saturations would get better as the sedation wore off. 
Friday, October 19…missed a call from Claire’s neurologist.  I was so bummed but I was in the middle of changing Tristan’s diaper when the phone rang…not much I could do at that point.  Dr. Wray left me a message stating that Claire’s MRI showed no real change and quite frankly he was surprised and stumped.  Because I am overly protective and cautious about all things Claire, I emailed Dr. Wray just to confirm the findings and to make sure I had understood his voicemail correctly, and I had.
So…no change is actually really good news!  For now, though there was no positive change to Claire’s brain, there was also no negative change and the Leukodystrophy conversation can go away (at least for now).  We of course delight in the Lord for keeping Claire’s brain as healthy as possible right now.  We are in the midst of a drug wean and the hope and prayer is that Claire will be less doped up and be able to learn.  Who knows…maybe by her 2013 MRI there will be change and it will be GOOD!
Thank you all for following our story and for praying for Claire.  The love and support is wonderful.
James 1:12- Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.

September update

September…a month (nearly) for the record books
As mentioned in the post from August, Claire came down with a cold while we were camping at Fort Stevens.  No big deal for most kids, but Claire falls into respiratory distress fairly easily and we were home less than 24 hours before departing on our Labor Day Weekend camping trip with Jake’s dad, who came up from Arizona to join us.  I took Claire to the Pediatrician and got her some precautionary antibiotics and we embarked upon our next trip…Grandpa Ron included.  We camped at Riverbend County Park on the Santiam River….one of our favorite spots! The weather couldn’t have been nicer and we were having a good time.  Claire’s antibiotics seemed to be helping and her seizures weren’t too crazy and she did spend some time awake during the trip.  We went to the fish hatchery one day at Foster Lake, made S’mores, and Jake and Ron enjoyed a round of “golf” with the toy golf clubs that were supposed to be for Tristan.  Seriously…I so wish I would have taken video of the golf game.  Tristan did enjoy picking up the golf balls and throwing them.  As always, our visit with Ron, went entirely too quickly and we had to pack up and go home.  We came home from the campground on Monday afternoon.  Monday night was a rough night for Claire.  Claire began having Grand Mal seizures…and indication that she was still sick.  By around 9 AM on Tuesday, morning Claire’s body had been through enough…with her 7th Grand Mal seizure, Claire stopped breathing…briefly.  Jake gave Claire rescue breaths while I called 911.  Without going back and counting I do believe this was the 6th or 7th call we have had to make in the last year.  Claire was whisked away to the Salem ER and by the time we got there Claire had stopped seizing and was actually breathing ok.  The problem we were now having was Claire was not responding to stimulation.  Claire was again “obtunded” which is medical speak for a state of consciousness to prior to being in a coma.  With the lack of response from Claire we decided to have her sent to Doernbecher (Salem doesn’t do much pediatric work…especially with kids like Claire).  Once admitted there was further testing done because Claire spiked a fever and we needed to get to the bottom of her illness.  It turns out that with the antibiotic for her cold Claire’s gut bacteria was again wiped out and she had another case of Cdiff…a poop toxin.  (Sorry…no nice way to put that)  We started Claire on a different antibiotic to treat the Cdiff.  During that admission, we also decided with the guidance (more like gentle shove) from Dr. Wray, to start Claire back on the Ketogenic diet.  A brief reminder…the Ketogenic diet is high fat, protein, and almost zero carbs.  The “blessing” this time around is Claire is tube fed and does not have to taste the awful formula.  We stayed in the hospital just shy of 1 week.  Upon discharge, we were feeling quite hopeful for the Keto diet this time around.  Claire went 4 days without a seizure!!!  While home, however, our next issue was beginning…we just didn’t know it yet.  Monday afternoon I was giving Claire her afternoon medications and her feeding tube clogged.  I tried everything I could think of trying to get the clog out.  I worked at it for about 30 minutes when finally with some pretty warm water and brute strength the clog dislodged.  The problem…when the clog disappeared there was a “pop”.  I let it go for a few hours but I just had a nagging feeling that there was something wrong.  By evening Jake and I decided it was best to take Claire to the ER and have her checked out.  After some convincing they did a dye test  and were able to confirm that there was dye in Claire’s stomach…a big no-no when she is fed into her intestines.  Claire was admitted and the wait was on for getting a new tube.  Tuesday rolls around and the Interventional Radiologist tells Jake they don’t have Claire’s feeding tube in stock at the hospital, but they did have a different one.  We said fine…just get her a new tube so she can eat.  The IR doctor lectures Jake about the amount of radiation Claire is being exposed to (this is our 4th tube change since the end of Feb.) and we let the Doctor know we understand the risk, but our priority right now is to get Claire a feeding tube that works so she can have her medication and food.  We said we would discuss surgery and a separate J-tube at a later date.  Wednesday rolls around and we are thinking Claire will get her feeding tube…but alas, she did not.  Wednesday was a day that tested the patience of Jake and I to the max.  A nurse from the surgery team comes in to examine Claire and tells me the tube will not be put in until the next day.  According the NP, she believed the doctor from IR is “stalling” to basically force Jake and I to agree to surgery for Claire.  People…I am a calm person but I just about went through the roof!  I contacted Claire’s Neurologist and a patient advocate because in no small terms…I was PISSED.  By Wednesday it had been nearly 3 days since Claire had any food and though we were lucking out and getting her medications through her feeding tube we knew things weren’t right with her digestion because here seizures were picking up significantly.  On top of the increase in seizures, and the fact that we were being “bullied” into a decision we were not ready to make we had an insensitive comment by one of the neurology residents.  The patient advocate, who in no small terms was not all that helpful, did crack the whip and ensure Claire would get her new feeding tube on Thursday.  I spoke with the surgery team later on Wednesday and they tell me the IR doctor wants to repeat the dye test on Claire’s tube before he will agree to replace the feeding tube on Thursday, because he still did not believe there was anything wrong.  I told the surgery team if that is what it would take just get the test done and get the new tube in place.   Thursday…yay…Claire will get her new tube.  I walk with the nurse and Claire over to the main OHSU building where the procedure will occur.  We meet the anesthesiologist and he is again saying they will do the dye test and “IF” there is a problem they will place the new tube.  At this time, Claire is having a grand mal seizure and I am furious that there is even an emphasis on the word “IF”.  Needless to say as Claire’s seizure ended she vomited her meds…here’s an anatomy lesson.  Claire’s feeding tube goes 40 cm into her Jejunum (small intestine); if the feeding tube is working properly there is no chance of reflux.  I looked at the anesthesiologist and asked in a very irritated manner “If her tube is working properly, explain to me how she just vomited from 40 cm down in her intestine?” Basically he told me not to shoot the messenger.  So after about 90 minutes I went down to the recovery unit and met with Claire.  I asked the recovery nurse if Claire’s tube had indeed been replaced.  He looked in the computer and said yes, the old tube was impacted.  Ok….see….mom knows best!  I could hardly believe it had taken 4 days and all of the fighting to prove there was indeed something wrong.  Don’t get me wrong, I was more relieved that Claire could now have food.  As a mother, if I had withheld food from Claire for any reason, even if I felt it was justified, I would have been charged with neglect or abuse.  I still do not understand to this day how the hospital can take no action and withhold Claire’s food for 4 days with no consequences, especially when you consider her food as a therapeutic treatment for her seizures.  Needless to say we were more than ready to go home.  We were discharged from Doernbecher on Saturday and by Tuesday we had Claire back in the ER for uncontrolled seizures.  Claire stayed an additional week and we didn’t really make any changes…just waited it out.  In all honesty I think she was just seriously out of whack from the previous week where she had no food and we don’t know how much of her medication was actually being absorbed since her tube was impacted and her meds were going into her stomach. 

For all of you who toughed it out and read this entire entry…I give you kudos!  I tried to think of a better way to sum up the month of September but just couldn’t. 

August update

August 2012
August was an insanely busy month for us and to be honest even though it’s only October I feel like I’ve forgotten most of what went on.  The highlight of August was being able to take another camping trip in our new motorhome.  We went to Fort Stevens and had an absolute blast.  The weather was really great and though Claire started coming down with a cold, we all enjoyed some coastal air.  We also saw Claire’s neurologist in August and the appointment itself was fairly un-eventful.  I will write another post that goes into deeper detail regarding Claire’s sleep study and the long conversation I had with Dr. Wray (Neurologist) after the results.  For now…enjoy a few pictures of our vacation.

May June July 2012

May 2012
May was fairly uneventful all things considered.  Claire got her wheelchair and we were able to get tie-downs put in the van so we could transport Claire in her wheelchair.  When working with R&J Mobility (the greatest people to work with!!!) we inquired about whether they could add a ramp or tie-downs to a camper or trailer as we were dreaming of someday owning one so we could once again camp.  Well…guess what??? R& J Mobility just happened to have a 32 ft. converted motorhome on consignment.  In a matter of 12 days we went through 3 loan inquiries and finally found the financing we needed and walked (or drove) away with our new “home on wheels.”  Claire had a UTI and also had a port placed for easier access in emergency situations but was otherwise good.  Tristan continued his growing and exploring.  My birthday present was 2 nights camping with my mom before Jake, the kids, and my dad joined us.  We had our first outing in our motorhome and it was AWESOME!!!

June 2012
June…not much to report.  Biggest news was getting Claire off of Ativan.  The immediate difference in Claire’s alertness was nothing short of God’s grace.  Claire had 3 great therapy sessions and was showing more life than we had ever seen.  Claire did end up with one major kidney infection and had to have IV antibiotics for 14 days…thank God we had her port and could complete the medication at home…our total hospital stay for that incident was only 4 days.  We have a dear friend that has a swimming pool, and I was lucky enough to get to take the kids swimming for the first time.  Claire loves the water and Tristan did great…even started learning how to kick his legs.
July 2012
Also not too much to report from July.  We took our 2nd trip in the motorhome and went camping at Riverbend, which is on Hwy 20 just past Foster Dam and Green Peter.  We camped with my mom and dad and aunt and uncle.  The weather was great and it was relaxing but far from ideal.  Jake came down with a terrible cold and I had an allergic reaction (come to discover it was the sheets) and had hives from head to toe the whole trip.  Upon our return home, everyone else caught Jake’s cold and Claire spent a couple nights in the hospital waiting for the virus to run its course.  However, we were just thankful to get a vacation…first one in a couple of summers.

March & April 2012

March 2012
The month of March started fairly quiet for the Hales family.  Tristan was getting into as much mischief as possible and beginning to really enjoy eating solid food and Claire was on the mend from her infections from February.  About mid-March, Tristan got his first cold.  Believe…at 11 months that is almost a miracle but as is the norm…it spread around the family.  I was the next victim of the cold and then poor Claire.  Jake was gone when the plague, I mean, the cold struck so he was the only one not to get it….which was good because he had to go to the hospital and stay with Claire.  Claire’s cold turned into pneumonia which is just a part of what we will battle any time she gets sick. 
Tristan started walking…and life was forever changed…LOL!
Biggest news in March…Claire turned 2!!!  I seriously don’t think any of Claire’s doctors expected Claire to make it to her 2nd birthday and yet here she is.  We couldn’t be happier or more proud of the progress Claire is beginning to make.  We started Claire on an extended drug wean and hoped it would give her more alertness.
We also celebrated both Claire and Tristan’s birthdays with an open house and we had a GREAT turnout.  What love our family was shown.  We were blessed to have family and friends gather with us to celebrate the gift of life.

April 2012
Big news…Tristan turned 1! I can’t believe how fast the time went…seems just yesterday he was a tiny bundle and now he’s up running around.  Watching Tristan grow is amazing and he is so sweet to Claire that I just couldn’t ask for a better sibling to her.  Though sometimes tiring we take delight in all things Tristan…even his shenanigans. 
As for Claire, April was an eventful month.  Claire was having some serious issues breathing on the night of April 7, and her seizures were a bit out of control and we ended up calling 911.  Claire was taken to Salem Hospital and then transported to Doernbecher.  Claire spent less than 24 hours intubated, which was good, but she was still having some major airway issues.  Mom and Dad were great and brought Tristan to visit and our Easter dinner. We’ve just learned that celebrating holidays can be done from anywhere…even the ICU.  Claire was sent up to the intermediate care floor on the 8th and stayed there until discharge on April 17.  It was finally discovered that Claire had gigantic tonsils (I kept asking about this) and the decision was made to have them removed ASAP.  Claire had her tonsils, adenoids, and some scare tissue taken out of her throat on April, 12.  Claire spent 1 night post-op in the ICU then it was back upstairs.  Claire was in severe pain and it took a few hours to get caught up on the pain meds and get her comfortable.  Once pain management was under control…Claire was resting well and already breathing better.  Claire made a quicker recovery than was expected and after 4 days had her nasal trumpet (breathing device) removed and two days after that she went home! 

Meanwhile, my dad was awesome and stayed at the hospital with Claire one night and my mom kept Tristan, and Jake and I stayed at a hotel for our first night with no children in just over 2 years!  We had a great date and I didn’t fret too much.

Jake’s dad and step-mom came to visit from Arizona the last weekend of April.  We love getting to seem them and spend time with them.  On April 28, we went down to Eugene to meet up and eat with some other family.  Claire wasn’t having her best day ever and was having quite a few seizures.  While at the restaurant, Claire had a couple of seizures back to back and was turning blue (normal for her) so Jake took Claire out to the van to give her some oxygen.  While we finished boxing up leftovers, paying the bill, and using the restroom, things got bad quickly outside.  I got out of the bathroom to find and ambulance in the parking lot and Claire being put in the back.  Jake said by the time he got Claire outside she had stopped breathing all together and he could not find a pulse for 2 minutes.  My awesome hubby jumped right in with full CPR and asked a stranger to call 911.  Claire was rushed to the Eugene hospital and then transported to Doernbecher.  True to her own uniqueness…Claire went home from the whole ordeal the next day.
I will write more about this last experience in a different post…for now I’m just trying to get caught up on the events of our life. 

Jan. & Feb 2012

Welcome 2012!! May we see blessings where it seems there are none and bring glory to God in all we do. Health, happiness, & fewer hospital stays...just a few of my wishes for this year.
For the month of January we did well.  It snowed…there was a little sunshine, but most of all there was RAIN and lots of it.  We had over 5 inches of rain in 48 hours and Salem flooded. Aside from that, January was calm. 
Tristan had his 9 month check-up and vaccinations and was crawling everywhere. 
Claire was doing well.  We started her Ativan wean, ordered her wheelchair, and enjoyed therapy. 
Jake and I, along with my parents, were exhausted.  Jake was travelling a TON in January and I think we were all on the brink of burnout. As always, God is faithful and kept us all sane and functioning.

February seemed pretty uneventful in retrospect.  Claire had an aspiration pneumonia (again) which led to her getting a G/J tube…bypassing her tummy and allowing food to go directly into her intestines.  The simple procedure and tube placement cut Claire’s reflux down instantly.  Probably the most difficult thing for me (at the time) was Tristan just deciding one day to stop nursing.  I of course had a long wean planned for him that was going to go well past his 1st birthday.  I think after about 3 days I snapped out of my funk and realized that there was some new found freedom and stress relief from not nursing Tristan anymore…he could easily be dropped off with a sitter in emergency situations and though I hated washing bottles…I did start spending less time sitting on the couch.   We enjoyed the Super Bowl with my family as is our tradition and cruised into March.

December blog catch up

The start of December was great. We had our tree up and decorated the first weekend after Thanksgiving. I managed to do some baking and also had a few presents wrapped…unheard of if you know me. Jake and I had taken the kids out to eat, and to pick out our annual Christmas ornament and then met my parents at Riverfront park for the Christmas tree lighting. We were seriously enjoying our “normalcy.” December, 13, we ended up having to take Claire to the ER at Doernbecher for increased seizure activity. The ER did their best to slow Claire’s seizures, but could not so Claire was admitted to the Pediatric ICU. On the 14th, Claire was having some airway issues and was on oxygen all day. Jake was out of town and my dad was kind enough to go up to the hospital to stay with Claire that evening. Prior to me leaving Claire was really out of it…nearly unresponsive. I learned a new medical term-“obtunded,” which is a state between aware and just before coma…Claire was conscious, but barely. Claire was not gagging and was basically laying in my arms just whimpering. Later that evening, Claire lost her ability to breathe on her own and was intubated. Claire stayed intubated for about 48 hours. On the 16th Claire was extubated, and showing improvement in her breathing. The breathing tube had left Claire very hoarse and raspy but at least she was breathing on her own. The overwhelming feeling of sadness and struggle that I had was monumental. I was struggling with how sick Claire was and feeling so sad that we were in the hospital so close to Christmas. As is always the case, God was faithful and helped me through it and healed Claire enough to be discharged on Dec. 21. Claire’s actual diagnosis was aspiration pneumonia. Claire had inhaled vomit and gotten sick. While hospitalized Claire received antibiotics and also had a test done to confirm reflux. We left the hospital with an altered feeding schedule and were able to have Christmas at home with our family!
In the midst of all of the chaos and sadness I was feeling with Claire, Tristan was being a good boy and growing like a weed. He was “furniture walking” eating more and of course flirting with the nurses every chance he got. Tristan was full of laughs and snuggles…something this mommy needed when I could not snuggle with Claire.
Should anyone wonder what our life was like with Claire in the hospital and Tristan still nursing…here is a small glimpse.
6 AM wake up…feed Tristan, shower, grab coffee and something to eat and hit the road hopefully by 8. Get to the hospital and spend all day with Claire while Jake worked. Try and eat dinner with Jake at the hospital before Tristan and I headed home. Jake lovingly stayed with Claire and though it was rough, God gave us the strength to make it through.
One other blessing…on December 17, 2011, my brother and his lovely wife welcomed their first baby…a beautiful girl born with a head full of hair. Cecilia Belle…I drove from Doernbecher to Corvallis to meet my niece…it was a long day…but worth it for newborn cuddles and to congratulate my bro & sis-in-law.

November blog catch up

November seemed to be a pretty quiet month. For Claire there were good days and bad, but she seemed stable and content. Tristan started pulling himself up on things and babbling a little more. We prepped for Thanksgiving and to decorate for Christmas and enjoyed our Thanksgiving tradition with my family.

October blog catch up

Looking back on October it was relatively quiet all things considered. After having the first VNS removed due to possible infection Claire had her VNS put back in the middle of the month. We stayed 3 days so Claire could receive antibiotics and then went home. We were home just a couple of days before we needed to call 911 in the middle of the night because Claire had quite breathing. To be honest I don’t remember much about that incident other than no one knew why Claire stopped breathing though this was the beginning of the concern for apnea. We were at the hospital a couple of days while Claire stabilized and then went home. Tristan started crawling in October and was starting to eat people food. I did a lot of baby snuggling in October and tried to enjoy every moment with my kids. We didn’t take the kids out trick-or-treating but I dressed them up and took them to Bank of the Cascades for a visit with my friends and former co-workers. Though I remember feeling stressed, it would be nothing compared to the months to come.

September blog catch up

September, 2011…
The month of September was fairly stable and filled with antibiotics for Claire…and waiting. The month went by without much excitement…except for one incident. Claire definitely keeps us on our toes.
September 21…we had an appointment with the neurosurgeon in Portland and my mom went with me and the kids. I believe this was the appointment we scheduled the placement of the second VNS for Claire. September 21…also my mom’s birthday. We decided to stop in Woodburn on the way home and do a little shopping. It was a warm day and we were enjoying shopping at Carter’s for the kids’ some new clothes. While at Carter’s Claire had a seizure or two…nothing out of the norm. I was looking at some clothing and looked down at Claire and she was not taking good breaths and was starting to turn blue. I put my stuff down, took Claire out of her stroller and was rubbing her back because she had at this point turned completely blue and was not breathing at all. We rushed back to the van because I keep an oxygen tank in the van and I got Claire hooked up and pink again. I had also called 911 at this point and the Woodburn fire department and ambulance were quick to respond. At the time, of course, this was not funny but looking back on all that occurred we were quite the spectacle. We followed the ambulance up to Doernbecher and got Claire all settled into the ER. By the time we got there, Claire had stabilized and we were waiting for Jake and my dad to get there. My parents left the ER and a couple hours later so did Jake, Claire, Tristan and I. I do believe to that point in time it was our fastest trip in and out of the ER.

So I can’t say it was a happy birthday, but it was a memorable day for sure.

New updates

So my last update Tristan was all of two months old and Claire was still struggling with her seizures.  Looking back on that time, I know we only survived by the grace of God.  I remember little of our daily life from being sleep deprived and because now we are in a much different place.  I will be open and honest and say that I began taking anti-depressants for postpartum depression and that at least helped me feel not quite so crazy.  Tristan was growing and hitting his milestones and Claire was having good days and bad and life was moving on…we were adjusting and settling into the best “routine” we could. We were prepping for our annual family camping trip in August and the first of many life changing events for Claire began.
August 13, 2011…Claire was having seizures through the night and this was nothing new.  We had given Claire several doses of rescue medicine, as instructed by our neurologist, and Claire began having some difficulty breathing.  I had actually gone back to bed and I had a nagging feeling I needed to get up.  Just as I was getting out of bed I heard Jake yell to me to call 911.  I got on the phone and walked into Claire’s room to find Jake giving our sweet girl mouth to mouth.  Claire was not breathing and had begun to turn blue. The paramedics arrived and whisked Claire to the Salem Hospital ER.  I got Tristan up and we went down to the ER and my parents met us there as well.  When I got to the ER I went to see my girl and she was intubated and they were in the process of getting IV access.  On the way to the ER, the paramedic had actually given Claire and IO (drilled into her bone) to administer some medication and start fluids.  When Claire was stabilized we had the PANDA team come from Doernbecher’s and transport Claire to the ICU. 
Claire was intubated for 2 or 3 days…I honestly don’t remember now.  Claire was kept heavily sedated to keep her seizures at bay and to keep her from pulling out her own breathing tube. For not having a lot of dexterity in her hands you would be amazed what our little Claire Bear is capable of.  After a couple of days we weaned off the sedation meds and began to allow Claire to wake up.  Claire was successfully extubated and was breathing on her own as if nothing had happened.  The attending neurologist during that visit asked us if we would be interested in having a Vagal Nerve Stimulator (VNS for short) implanted in Claire.  We said yes, and had been wanting one for some time but were told when Claire was a baby she was too small.  Dr. Pinter said he would put in for a consultation with the neurosurgeon and get back to us the next day…20 minutes later he came back and said the neurosurgeon had a slot for 2 days later. Amidst our stress and anxiety God threw that door wide open…there was no doubt this was the right decision for us to make. 
Claire had her VNS placed by one of the best pediatric neurosurgeons around.  Dr. Selden has been recruited by bigger and better hospitals but has chosen to stay at Doernbecher’s and for this we praise God.  Claire was in great hands…her operation went smoothly and we were discharged a few days later.
Claire ended up back at the hospital with in a few days…turns out she had a terrible bladder infections. After having her VNS for a couple of weeks, the swelling never went down around the generator in Claire’s chest…to our dismay and disappointment we had to have the VNS removed…do 6 weeks of antibiotics and then have it put back in.
That pretty much sums up the month of August.  Tristan was an absolute doll…at 4 months old he was easy to please and loved flirting with the nurses.  I would walk him around in the baby carrier until he would fall asleep and we spent hours at Claire’s bedside playing, singing, rocking, and of course…praying.

To those who gave

To all of you (you know who you are...)who have been so generous to send monies to The Hales family, I wanted to take a moment to say Thank You. Thank you for your generosity and kindness to reach out to this beautiful and faith filled family. All of the kindness adds up and together we were able to save aside some monies for the Hales. I know some of you who donated have never and will never meet Claire or her family, but were led by the Lord to give. I personally prayed over each of you as the donations came in. And I just wanted to say Thank you on behalf of the Hales family! Thank you, to those who gave. Thank you to those who prayed and are still praying. Claire is not on "the the other side" of this by any means... but we rest in the peace of the Holy Spirit and God's will and timing. He has it all in His hands and has great plans for Claire and her precious family. Thank you for the support prayers and donations to the Hales.
With love, Traci

To all our friends and family

To all of our friends and family, I realize I have neglected to get you updates on our family.  I thank you all for your prayers and continued support and feel I am now in a place where I can get more updates out to you all.  I will post a series of short "past" dates to get everyone caught up.  Thank you for your patience.  Much love, The Hales Family