Prayer Request for June 23

Thank you to all of those following our story and praying for us! We have a major prayer request for today, June 23. We are scheduled to go home tomorrow!!! We will be going home with monitoring equipment and rescue medicine so we should be able to stay home this time. Please pray we actually get discharged from the hospital tomorrow, that we get home smoothly, and that Claire continues to show improvement (she's shown slight improvement this last week). We are excited and cautiously optimistic.

God Bless~
The Hales Family

Random photos

Random photos of Claire in the last month. The photos where there is a bandage around her head is an EEG...the bandage helps keep the wires in place. :) After her EEG she gets crazy hair from the glue they use. Claire loves bath time and her bouncy chair...even though I missed catching her smile on camera.

Father's Day

Father's Day~
Jake's first Father's Day was spent at Doernbecher's Children Hospital...as was my first Mother's Day. Though this is not where we anticipated we would be we were able to make the best of our situation and enjoy the fact that we have a beautiful baby girl who brings us joy on a daily basis. I (Rebecca) have been so impressed with Jake. I marvel at the love he shows Claire. I never doubted that Jake would be a great dad but I am nearly moved to tears every time he looks at Claire and tells her she is precious. I do not know if he will ever fully understand how I am impacted by his gentleness and patience and the tenderness he shows Claire and in so doing...shows me.

Claire gave Jake the best present he could have wished for...36 hours without a single seizure. It has been 16 days since she has had a seizure free day. The photos that will be attached to this post are from her seizure free time....the times we cherish the most.

Claire's seizures returned on Sunday and unfortunately we ended the evening with 2 failed doses of rescue medicine and had to resort to using her IV to bail her out. On the bright side, she has been seizure free since (12 hours) and woke up enough to feed by mouth. I also got to practice putting in Claire's feeding tube last night as she was too tired to eat after all of her medication. Though it is a skill I wish I never needed to learn...I placed the tube in the right place on the first try!

Today (June 21) we will be going up on her Zonegran which we feel is truly helping her but only time will tell. Please pray with us that the increased dose of Zonegran is beneficial and that we can still make it home this week.

God Bless and Thank you all for your support and prayers...we would not make it without you.

June 18

Something disrupted Claire's typical epileptic cycle. I can only hope its the Zonegran and its having a positive impact. Claire had one of her bad days yesterday. Although I can' say that today was great with 36 seizures, at least there was no Ativan administered since early this morning. Since I've been back at the hospital from my trip to Boise, Claire hasn't had any seizures. She just bottle fed extremely well, muscled her NG Tube out, and is cooing like she's trying to hold a conversation. Pray that all of that continues.

The hospital is working on getting us home next week. Unlike our first 3 day stint at home before returning to the hospital last time, they will be sending a fair amount of equipment home with us. We are learning how to administer the NG tube in the event Claire is on a bad day and can't eat without assistance. They will also send us home with oxygen and a Pulsoximeter Monitor for those rare occasions Claire's Oxygen desaturates. If I were to guess, I'd say we will go home on Wednesday or Thursday, when I am home for a full day from a trip to Spokane. You know by now, this can all turn on a dime. I ask that you share my cautious optimism.

The Neuro Resident has posted Claire's situation on the List Serve, asking if there have been any similar cases treated or diagnosed. We are also prepping for a 2nd opinion at the Mayo Clinic in Rochester, MN. As the plan stands now, we will do that as an outpatient. Claire's records will be sent over for them to review. In the event that we end up going there in person, it will be for a relatively short visit. As with all things, we will cross that bridge when we get there.

Medication Roulette...June 14

Once again we spin the medication roulette wheel. At this point, we feel like we have as much chance of winning the lottery as we do landing on a drug treatment that will cool Claire's seizures. We've already gone through so many.

Now we are going to try a diuretic called Zonegran. Claire will be peeing even more than she does already. Let me give you a sense for how this works. There are many, many anticonvulsants. And it’s not because pharmaceuticals are aggressively seeking a cure for Epilepsy. Actually, the pharmaceuticals are more likely looking for an antidepressant, diuretic, or some other treatment, but a side effect is as an anticonvulsant.

We do have some good news to report. The withdrawal from the Ketogenic diet has lead to Claire gaining weight again and having regular BMs. We have also ended the drug treatment Trileptal after a two week weaning. The vitamin treatments also appear to have failed, so we will be withdrawing those as well.

There is still no diagnosis for the cause of Claire's Seizures. So we have asked the doctors to be aggressive with genetic testing. I don't hold high hopes for getting a result. But having the tests done now may prove beneficial in the future.

As always, we ask for your prayer. We are desperately seeking a treatment that will allow us to get home. Claire has returned to this cycle of 36 good hours followed by 48 bad hours. We can anticipate Claire's bad days, but have yet to find a rescue medication other than Ativan. We hesitate using it for too long, because she is already growing a resistance to it.

Pray for a treatment that keeps us from having to use rescue meds. Pray for us to get home soon. The hospital is wearing thin as a place of residence.

Prayer Request

I Traci Kenitzer am praying and trusting the Lord do a miracle of huge proportions! As I was preparing to get baptized last week, the Lord put this on heart and here is what I prayed. Agree with myself and others who are trusting for this miracle for Claire and her family.

For Claire: We are praying that just as sudden and unexplainable as her seizures came on they would leave her body, for now and forever. That no medicine or Dr. could be to blame, that the only explanation would be or could be that she was healed by Gods hand and Gods hands alone.

For Rebecca and Jacob: That every single dollar of medical bills that have or will come up from the time Claire was born would be paid off in full. That the Hales would not have to fork over a dime, that the Lord would faithfully and miraculously provide every dollar for them. Then once all of their bills are covered, I ask that the Lord would bless them in excess of $7000. I know that no amount of money can make up for the memories and time lost. But instead, when they bring Claire home healed that money would be that last thing from their mind. That they could just enjoy their daughter and their time with her. They have come so far to have her in the first place!

Agree with us that Lord is going to provide this for their family. He has a greater plan than we will ever know while we are here on earth. I pray that the only outcome of all of this would bring God praise an glory and tremendously bless Jacob, Rebecca and Claire!!! Amen.

Making A Push..June 7

Since Claire has been at Doernbecher’s, she had a possible diagnosis of Tuberous Sclerosis with 50,000 cases in the US, Pyridoxine Deficiency with 100 cases in the US, and now possibly a disorder that has had only 36 diagnoses in the last 40 years.

Shelly came on Saturday to visit us (Thank you!). During her conversation, Rebecca mentioned that I had observed a correlation between Claire's BMs and her seizure activity. This was something I had not thought about in a few weeks. But the mention of it sparked an idea and did some reading.

There is a very rare disorder called Abdominal Epilepsy. It is well known that the Vagus nerve is tied to some types of Epilepsy. The Vagus nerve is also the primary neural pathway transmitting signals from the abdomen to the brain. It is my belief that pains generated in Claire's tummy may be causing at least some of Claire's seizures.

There is good and bad news with this. The bad news is that it would mean at least half the treatments Doctors have prescribed for Claire are not appropriate for this kind of Epilepsy. Doctors will be resistant to admitting that a good portion of her care may have lent to a decline in Claire's overall health. For example, the Ketogenic Diet, which has a high rate of success with most Epileptics, is utterly inappropriate for someone with Abdominal Epilepsy. Imagine having constant tummy cramps and the only food you could eat is sticks of butter. A high fiber diet is more appropriate.

The good news is that if we can confirm this as the diagnosis, her treatment may simplify considerably. Drugs with side effects including stomach pains will be removed. The Ketogenic diet will be supplanted with a high fiber diet. Relatively safe drugs such as Phenobarbital and Keppra will remain as her maintenance anticonvulsants.

Our challenge now is to convince doctors that they need to adapt their treatment. Although we can pull "Patient Rights" we want to be careful not to damage our relationships with her doctors. We were able to convince them to add a laxative in order to regulate Claire's BMs. After some interesting results, I want to take the next step and get her off the Ketogenic Diet. I may have to flex some muscle to get this done.

Added to the mix, the weekend attending physician added Folenic Acid as an adjunct to Claire's Pyridoxine treatment--some cases have shown this to improve conditions for Vitamin deficient patients. Claire had another EEG today. Fortunately it was nice and short.

I hope you get the sense that Rebecca and I are not sitting idly waiting for Doctor's to get this right. We want our baby home and soon. Pray for our strength. Pray for Claire.

June 3-Something Isn't Right

When I last wrote to you, I told you that we got a diagnosis of TSC (Tuberous Sclerosis Complex). Rebecca and I were of course frustrated with that, but who wouldn't be? Perhaps we were in denial, but it never sat well. They made the diagnosis based on the level of Claire's seizure activity and what they thought was a Tumor in her heart. For me, this was weak--far short of ALL the criteria needed make this diagnosis. In typical TSC cases, you would also see skin lesions and issues with the eyes--Claire came up negative for both those test. But Doctors were in such a rush to put together a treatment plan they insisted on sticking with TSC as a "working" diagnosis and suggested that more symptoms would develop over time.

Remember rule number 1? Prayer. I prayed a lot about this. Mainly I asked God for comfort. What I got was a great deal frustration, sleeplessness, and a nagging discomfort with the diagnosis.

I asked for the DNA test of TSC. What I didn't realize at the time was that there is only one lab in the country that tests the two chromosomes for this disease and that there was only a 70% chance of getting an accurate result. On top of that, it would cost $5,000, not covered by insurance.

When we received the paperwork to get the test, I stalled. I couldn't say why, other than I didn't feel right about it. To top this all off, my wife had to communicate this to the doctors on my behalf!!! I have been working during Doctor's rounds. My dear wife has some serious stones. She trusted me enough to arm herself with my discomforts and hold at bay the doctors. Way to go Rebecca! I also told Rebecca that I wanted the Doctors to give Claire Vitamin B6 and again, she conveyed that wish to doctors on my behalf...more on the Vitamin B6 to come...

This morning, after I left for work, the Panda team had come to take blood from Claire for the TSC test. When they were nearly finished taking the blood for the test, one of the Neurologists burst into the room and halted the procedure. Apparently, the Epileptologist was reviewing all of Claire's tests, and reviewed her echocardiogram with the cardiologist. There was a typo!! Yes, an F-ing typo!!! There is no tumor on Claire's heart. TSC is not the correct diagnosis.

But wait...there's more. My poor wife had to endure the lackluster communication skills and unfortunate data bases here at Doernbecher's. Not an hour later, the Pediatric Resident came in and told Rebecca that it still may actually be TSC! I can only imagine my wife's response, and it’s truthfully her story to tell, but that Doctor got a reaming I'm sure she'll not soon forget. Way to go Rebecca!

Remember rule number 4? Advocacy. No one can fight for your child better than you can. An uproar in OHSU's Neurology Department finally dealt us a confirmation that Claire does NOT have TSC. Thank you God for the strength to ask questions, stall, and follow our gut instincts.

Claire has gone 30 hours as of this note without a seizure. My hope is that she has a disease called Pyridoxine Deficiency Seizures (PDS)--seizures caused by a shortage of Vitamin B6. It is terribly rare and horrendously under diagnosed. There are only 100 diagnosed cases World Wide. Why am I HOPING for this? Well, it is easily treated with large doses of Vitamin B6. Pray about it. Pray hard. We're ready to be out of this place.

A Diagnosis, May 28

I wish I could say that there wasn’t much action while I was in Autotrader training in San Diego. My wife and mother-in-law found themselves in an all but forgettable adventure, starting with a trip to Salem’s ER where my wife was older than the ER Doc. Then they had another ride with the Panda Team to Doernbecher’s Pediatric ICU, where I am sure they went sleepless in an open area with monitors dinging constantly doing their best impression of a Vegas casino slot room.

I can’t say that I’m surprised. Claire averaged a nasty seizure every 12 hours and we had to refill her Diastat rescue medication twice during our short weekend away from the hospital. That is unacceptable, and a trip back to Doernbecher’s was inevitable.

I would have liked to have kept you all apprised of this, but I managed to catch a nasty bug from a hacking neighbor on my flight down to San Diego. I was a slug, only managing to get through the course material with help from my old friends Mountain Dew and Red Bull. The time not spent in class I spent attempting to sleep in my hotel room. Only after my last hour and half nap here in the hospital room in Doernbecher’s do I feel coherent enough to write an update.

We have a diagnosis thanks to a gut instinct by the Neurology Director here at OHSU. Claire’s hemorrhage and strong breakthrough seizures reminded him of a similar case which occurred 20 years ago in San Francisco. Yesterday, they did an ultrasound on Claire’s heart and found a tumor. Before you freak out, know that the tumor in the heart will likely go away without intervention. With her other symptoms, this is a lock for a disease known as Tuberous Sclerosis Complex. Rather than dive into a ridiculously long diatribe about what the hell TSC is, I will instead ask you to visit www.tsalliance.org for the gory details.

I will say what TSC is not. It is not cancer. It does not necessarily mean Claire will have severe disabilities. It doesn’t mean significant changes in treatment. If you take the time to research this disease, be prepared that many of the cited examples are worst cases and not what we expect for Claire.

Yesterday doctors began a steroid treatment called ATCH. If you Google this, like I did, you may dig and finally discover that this is a very complicated hormone, using a good bit of the alphabet just to spell it out. The word sounds like something in Swahili. Very complicated indeed. In fact, no one really knows why it can be effective as an epileptic treatment. However, it does seem to have a “Reboot” impact on the brain. It is a short term treatment that can lead to reduced medications and controlled seizures when combined with the Ketogenic Diet. Thank God the treatment is short term. The Co-Pay alone costs $14,500 for 1 month. If effective in the first month, Claire will have two more months of treatment.

Now let me introduce you to one last acronym—NORD. National Office of Rare Disease. This God send of a Federal Assistant Program has flipped the bill for the ATCH Co-Pays.

Please pray that this works. Pray for Rebecca’s sanity and wish her a happy birthday on Sunday. Pray I get over this cold quickly. Pray that Claire’s TSC is causing her seizures but does nothing else. Praise God for Terry, Wes, Calvin, and Erienne. My in-laws have been pressed into service and they are doing a remarkable job. Thanks to the church for providing some groceries and a gas card. The little things really help.

Finally Home...May, 23

Sorry about my delay in writing to you. But, finally getting home after 8 weeks in hospitals has proven hectic. We were discharged from Doernbecher's on Friday.

I wish I could say our discharge was a result of a treatment breakthrough. But really it was just that Doctor's felt that we could provide as good of medical care at home as they could in the hospital. Epilepsy treatment, if described as a single word, would be, "slow". Treatment in adults is modified by very subtle changes in a single medication and then, a noticeable change could take a week or two.

This gets infinitely more difficult with an infant because their mind and body changes daily. On top of that, pharmaceutical companies rarely pay for research in infants, for much the same reason. In research you need a control group and a steady state. Because of a lack of parents willing to allow their children into clinical trials, complete lacks of steady states, and a short range of payoff for the pharmaceutical, don’t count on a sudden surge of infant research any time soon. The only real data comes from case studies. But our country's unusually stringent medical privacy laws make it all but impossible for research universities to compare data and come up with any real solid conclusions.

That was just a long winded way of saying that there's very little doctor's can do for Claire right now. In the meantime, we have brought Claire home and started what looks like our own pharmacy in the kitchen.

On both Friday night and Saturday night we had to use Claire's rescue medication Diastat to abort extended seizures. All in all, Claire has only had 4 seizures since we've been home. I can't say at this point if that is a good or bad thing. These episodes don't match any pattern she's had in the past and there are too many variables to be able to ascribe them to any one thing. One of her medications, Klonipin, is being weaned and she has been in a state of ketosis for a few days.

All I can say is that we cannot afford to be giving her Diastat every day. Not only is it horribly expensive, but she could quickly build a resistance to the drug. In the beginning, it would put her out for 12 hours. More recently, it only puts her out for 2 hours. We can only wait, pray, and hope, she stops having seizures like that.


Some of you have offered and some have already brought us a dinner or two. Thank You! It is one chore that is nice to not have to worry about. And for those who sent gift cards, thank you again! You likely funded supplies for our home pharmacy. If you have something in mind or on your heart, just send us a note or call. With a child of special needs, we've learned already that it really does "Take a Village..."

That said, you're prayers are still most welcome.

A note on coping

Many of you have commented that Rebecca and I have coped well with Claire’s Epilepsy and our extended hospitals stays. I hope you’re right and we have handled it well. But there are no secrets to what gets us through. I want to take a moment to share with you.....................................................................

1. GOD. Okay, I might of lost some of you right there. But hang in. Ever wonder why EVERY civilization creates some kind of religion? Spirituality is imprinted into our DNA and you’d be hard pressed to find an Anthropologist in the world who’d disagree. When there are no answers in the world, God gives us peace, and it is difficult for me to put in words the value in that. There is a source that is pretty good and you may have left on the shelf thanks to poor media coverage: The Bible. Yeah, there’s some good stuff there. Prayer. You may not have a relationship with the Great Unknown, but you’d be surprised what some meditation and voicing your concerns aloud can accomplish.

2. SCIENCE. What? Aren’t I making some kind of fatal contradiction? A paradox? It would be like a Progressive and a Tea Partier compromising and working together—is that possible? GROW UP. Too many Christians forgo science and way too many scientists forgo religion. For me, the science is good…DAMN GOOD. I’ve read my fair share of Medical Journals and Neurology Text books of late. Some people have joked that I’ll have my MD by the time Claire is discharged. It’s true that science still knows very little about the Human Brain, but had my daughter been born a century ago, she wouldn’t have survived her first week.

3. ADVOCACY. Doctors and nurses are overworked, burned out, distracted, have huge egos, and lack any sort of communication skills. The technology is good, but still way behind what it could be thanks to a lack of government intervention in data systems. And, too much government intervention by way of the corrupt FDA. Don’t get me started on health insurance. Rebecca and I write down EVERYTHING. We educate ourselves, observe, and manage. More often than not, WE lead the doctors and nurses. But let me clear, we also LISTEN to what the doctors and nurses have to say. Most are dedicated and love the children. So we pay attention to the debates. We draw on their experience and wisdom. Most importantly, we ask a ton of questions and speak out when we think something is wrong.

4. ESCAPISM. We somehow need to step away and not feel guilty about it. I am able to grind into my work, exercise, read a book, or vegetate on my Nintendo DS. For Rebecca it’s a good cry, a good night’s sleep, some mother/daughter time, or me tearing her away from the hospital once in awhile. Just like our iPad or Phone, we have to shut down and recharge every couple of days. Leave your child with someone you trust. Rekindle your relationship with your spouse. If you two aren’t coherent, how can you expect to manage your stress and parenthood?

Claire & the Ketogenic Diet

Last Saturday night Claire had two really nasty seizures. The first, around 8:30pm, just before her evening meds, she began an unusual seizure. She did her usual eye twitching and when that stopped, we thought it might have been over. But I noticed Claire's arm doing an unusual motion with her right arm repeatedly--it looked like half the crawl stroke. Shortly thereafter she gave the signals for one of her prolonged seizures--she turns red, sweats on her upper lip, then gives a short scream. Then she desaturated and all hell broke loose. It was like a scene straight from ER. There were three doctors and 9 nurses in the room within two minutes. Atavin is the drug of choice for aborting a prolonged seizure and an IV is the fasted way to get it into the system. However, her IV had been removed earlier in the day. Nurses made four attempts to get an IV and failed. Finally, the resident doctor asked permission to administer an IO.

If you don't know what an IO is, count yourself among the lucky. This is an emergency process of administering drugs when a vein cannot be used. (The squeamish may quit here) A small, Dermal Tool like drill is used to drive a needle through the bone into the marrow. Diastat (essentially a rectal syringe of Atavin) would have been preferable, but they could not get the proper dosing back from the pharmacy quickly.

The pain with the IO was sharp enough to stop the seizure. Unfortunately, Claire began a second prolonged seizure at 10:30 that evening. By then, the Panda team had managed to get an IV in her and doctors administer two doses of Ativan to abort the seizure. She has been seizure free since--but we know Claire cycles in three days.

These episodes fulfilled the criteria we set to begin the Kenogenic diet. We started this today. It begins with a fasting period to get her blood sugar low and increase the ketones in the body. Stimulating the body to feeding itself on stored fat results in fewer seizures in most patients. In infants this is fairly easy to control, because you can use formula.

For Rebecca, this means the end of pumping and breast feeding, but only if it looks like Claire can handle the new diet. Rebecca is of course disappointed, but we have been prepping for this possibility for awhile now.

We have also begun learning the necessary procedures for home care. We are learning Infant CPR, how to make the formula, and how to administer Diastat. If you like, you can learn more about the Kenogenic diet at www.charliefoundation.org.

OHSU's Neurology Department is also agreed that the hemorrhage in her brain was not the source of the seizures. They have shifted gears and are prepping us for long term Epileptic care. I have heard from many of you and read many a case study about children who suddenly stop seizures sometime in their childhood. The fact is, most cases of what starts or stops Epilepsy is unknown by science.

Pray that this Kenogenic Diet works and we get out on Friday. As always, I'll give updates. Thank you for your faithful prayers.

Update from May, 14

Back to the drawing board. We tried eliminating one of her medications--Keppra, a couple of days ago. This resulted in over 60 seizures in a 48 hour period. The good news is that none of these seizures were bad. They were all about 3 minutes long and consisted of a little drooling and her characteristic eye twitching.

This afternoon they did a booster shot of Keppra and have added it back into her maintenance medications. The booster shot made an immediate impact and her seizures have slowed through the afternoon. Although we are disappointed, we now at least know that it is unsafe to withdraw medications at this time. So, if you are keeping score, she is now on 4 anti seizure medications--Phenobarbital, Keppra, Trileptal, and Klonopin (Clonazepam).

We are now seriously considering the Kenogenic Diet. This is a diet where 66% of patients see a reduction in their treatment medications and 33% can drop seizure medications all together. Scientists in the early 1900s recognized that religious groups that fasted for long periods had reduced incidents of seizures. Though not always called a Kenogenic Diet, this is an Epilepsy treatment that has been around for a while. It means that the body feeds off of fat as opposed to carbohydrates, which why this diet often gets compared to the Adkins Diet. Of course, in the case of an infant, the Klenogenic Diet will be regulated to encourage growth and has nothing to do with weight loss.

We don't intend on trying this diet unless one of the following takes play: 1. Claire continues to have seizures through the weekend on her four current medications. 2. We get more evidence that she will have epilepsy well into childhood. 3. She continues to quickly gain resistance to her medications over the next couple of weeks.

If Claire has a good weekend, we will go home Monday or Tuesday and continue outpatient care with OHSU. If we do end up going on the Klenogenic Diet, we will stay for at least another week. The diet requires constant blood sugar testing and urinalysis while Dietitians hone in her nutritional needs. The diet consists of 75% fat and as you can imagine, its tricky to get dialed in.

Claire had an EEG done today, showing reduced Electrical Seizure or "Background" seizure activity. This is great news and means that one or both of the new meds are working well. It gives us hope for a good weekend.

To add yet another wrinkle, Claire had some genetic testing done early in the week and some of the more complicated tests are coming back. We discovered that Claire has transposition of two chromosomes, 11 and 22. If you don't know what the hell that means, don't feel bad. The doctor's don't either at this point. They have yet to determine whether the chromosomes are balanced or imbalanced and have requested that Rebecca and I be tested for the same thing. Ultimately, the new information provided by this science will not change her treatment, but may determine how her epilepsy will behave long term or if there are risks for developmental issues. It may also provide more insight into our fertility issues.

Pray hard! We want outta here!

Update from May, 11

Doctors at Doernbecher's have been very aggressive with adjusting Claire's seizure medications. Over the weekend they stopped Phosphenytoin, which had been fairly effective but has some nasty long term side effects. They began a drug called Trileptal. This has a similar neurochemical impact on the brain as Phosphenytoin, without the negative effects. It does however take some time to get to a steady state, like keppra, Trileptal has to be stepped up over a few days--as of now she is taking a full dose.

The emergency drug they have been using is Ativan. Doctors have been using it to end very long seizures or seizure clusters. Its has a sedative effect on Claire, where she is too drowsy to even eat. They have put her on a fourth medication called Clonazepam. This will not be a long term medication, again due to long term side effects. This is from the same family of drugs as Ativan, but sometimes does not cause drowsiness. In Claire's case, it doesn't appear too and so far seems to be working. We hope to take her off it too and use it as our emergency drug.

Claire has not had a Seizure since 9:30 last Sunday night. Doctors are drawing down Keppra, which I don't believe has improved Claire's condition any and have pushed doctors to remove it if they can. Our hope is the combination of Phenobarbital and Trileptal are the winning maintenance medications. If she can go the rest of the weak without seizures, we'll be released by the weekend. But since we haven't made it through our three day cycle yet, we are very cautious with our optimism.

Doernbecher's has been very good with supplying us with a plan B. In addition to drug treatment they may try a dietary treatment called Ketogenics if the current plan fails.

Rebecca and I are doing fine. We are still staying at Doernbecher's in Claire's room. I have been working my accounts here in Portland and doing Webinars with remote accounts from one of the hospital's conference rooms. I have to travel next week, but hope we're out of here.

I think we are finally getting some progress. I will keep you posted and ask for your continued prayers.

Mother's Day...loving words from Jake

For those of you who have been faithfully following my updates on Claire, you no doubt have some idea about the nature of my dear wife, Rebecca. I am fortunate to have had nearly 11 years of marriage with her. We have gone through many trials, but this one is likely the most strenuous.

My wife has sacrificed much over the last six weeks. Though this is the expectation of a mother, she has also shown extraordinary, patience, strength, flexibility, and faith that places her amongst the noblest classes of human beings. I suppose I have some bias as a husband, but I doubt even a few of you would disagree.

Rebecca spent 14 hours a day at the Salem Hospital NICU, then showed amazing strength and faith to walk away and leave her baby in the capable hands of the nursing staff each night. She has kept a log of Claire's seizure activity and her own pumping. She has handled the stress with rationale blessed to very few women. Now we live in a small hospital room at Doernbecher's and she manages to smile and laugh.

My dear wife, I don't know if you can possibly imagine how proud I am of you. Your love for your baby is powerful and endearing. The management of your life and extended family has somehow been balanced, yet stridently dedicated. If anyone deserves a fantastic, escapist Mother's Day, its you. And yet, we will be here, at Doernbecher's logging our baby's seizures, interpreting doctor's speak, and tolerating cafeteria food. There are no flowers, jewelry, or spa treatments this year. But know this, there is no place I'd rather be than with you and our daughter. I love you. Claire will not remember these events and may not ever recognize the love you give her, but I do. And I will remember these days and their trials--and how brilliantly you manage to get through them.

Claire's move to OHSU, May 6

We hit a dead end at Salem Hospital. Our care there was very good. But ultimately we wanted the Neurologists to be up close and personal with Claire. Claire has had break through seizures with three and sometimes four medications in her. We need to find a treatment plan that reduces the risk of bad seizures when we finally take her home. OHSU will be more flexible and perhaps more "experimental" with her pharmaceutical treatments--more than Salem Hospital was willing to do.

The Doernbecker's Panda Transport team carried Claire by ambulance to Portland this morning at 10:30. The transport went well, though Claire did not appreciate being strapped into an adult gurney. We followed her up in our car about an hour later after we picked up some supplies from our house.

Claire is now being hooked up to what is her 8th EEG. This one will be for constant monitoring during our stay at Doerbecker's. Because we are no longer in a NICU, our presence is more valued. We are more responsible for her regular feedings and changings. We will have a button to push to indicate that Claire is having a clinical seizure, allowing the Doctors to review the EEG at the times it was pushed.

We are in a private hospital room. It is significantly quieter than the NICU in Salem. We have our own bathroom, TV/DVD, and a cot for sleeping. But it is not exactly comfortable. We have requested space in the Ronald McDonald House and may end up going there for some sleep opportunities. We may also consider an extended stay hotel, if there is no space available at Ronald McDonald. Fortunately, most of my scheduled work for next week is in Portland, so I can work from here.

We expect to to be here for at least one week. Many of you ask us all the time what you can do to help. Prayer, for the time being, is still the greatest need. Some of you have provided gift cards for dining, which has proven most helpful since we cannot store or cook food. Now that we are in a private room, guests are most welcome. You can find us on the 9th floor of Doernbecker's in room 42. Just pick up the black phone and let the nurse station know you are here to see us. This is a huge facility and the view of Portland is fabulous, with fine dining nearby--well worth the trip.

Thank you, for the umpteenth time, for your prayers, encouragement, and warm support.

May, 1

Claire has had her latest MRI. I wish I could say the results were astounding, but they revealed only that the hemorrhage area was a little smaller. This, of course, is very good news in the long term, but doesn't provide any short term answers.

Today Claire was relatively active and was seizure free. My hope is that she will go several days straight without a seizure and we can draw down the four medications that are in her system. Doctors are also looking at other drug options.

The game now seems to be Pharmaceutical Roulette. In any case, adult or infant, the goal of Epilepsy treatment is to prevent seizures with as few drugs as possible--ideally one. I think we are a long way away from that. So we are in a stage of trying different things. Pray for her to simply stop her trends of seizures after a couple of good days. The damage is healing so perhaps the seizures can become fewer and fewer rather than breaking through more and more drugs.

April, 29

Dear Friends, Family, and Prayer Warriors,

Rebecca and I have noticed a trend of Claire having a very alert day coming a day off a dose of Phosphenytoin. We've pointed this out to the doctors and hope they consider that in her plan to go home. Unfortunately it is a an IV drug, but perhaps there is a pharmaceutical solution that has not yet been considered. Today was a good day, and it was really nice to come home to Claire being alert and interactive.

The big news today is that OSHU had a 2nd doctor take a look at Claire's past MRIs. He thinks that the diagnosis of a stroke may have been incorrect and has ordered another MRI to confirm his suspicion. Instead he thinks Claire's symptoms are more consistent with that of AVM, a vessel strain disorder that causes a hemorrhage in the brain. This is actually has a better prognosis than the stroke, because the cells around the part of the brain in question are still alive, meaning Claire decreases her chances of developmental disorders.

If the New MRI confirms AVM and there is still a hemorrhage, they will consult with the Neurosurgeon for treatment options. I don't have any further detail than that at this point, but I will say that for us, these are the best answers we've had to this point.

Once again, we appreciate your prayers. They have brought us strength and patience. Please keep it up. And one day soon will have Claire home and healthy.

1 month in NICU

How do you do this? The warm, grandmotherly care we've had at Salem hospital has made a rough experience just a little easier. May God bless them in their stressful and sometimes thankless jobs.

We live day-to-day, trying not to contemplate the whys of being here and trying to pass off our stresses in any way we can. For myself, the ability to work in a job I love is a nice distraction. For Rebecca, she has buried herself in the love for her daughter. She makes it through, without a doubt with the power of your prayers and the knowledge that Claire is unconditionally loved by so many including many, who have not even had the opportunity to meet Claire in person.

We hope and pray that this chapter in Claire's life will soon come to a close. But as we have seen, there is a delicate balance to keeping Claire seizure free. She requires a large level of Phenobarbital in her system. Because she is an infant, and apparently metabolizes drugs quickly, it takes little to throw the balance off. We experienced this again yesterday. We introduced a new drug this week called Keppra. One of the side effects of Keppra is to increase liver metabolism. This led to regular seizures throughout the day yesterday. The good news is that the Keppra has definitely cut the effects of the seizures. Seizures were lighter, shorter, and less frightening than the monsters she endured last Sunday.

Today was a good day. There were very few seizures. She had great periods of alertness and activity. Though I dare not say when, I do hope we can be released soon. Please continue your faithful prayer. In addition, if you see a healthcare professional, please thank them for their service and care. No matter where you fall in the political spectrum, we must remember that these are people who sacrifice a great deal of time and exist in constant overwhelming circumstances. They need our encouragement and our sincere gratitude.

April, 18

It seems that every 5th day is rough. And sadly, today was the roughest yet. Seizures began lightly this morning and began increasing in intensity throughout the day. By 4:00pm, she had seizures lasting 15 minutes followed by sequential twitching lasting 45 minutes--you could call this one long clinical seizure. She would only have about a 15 minute break between seizures.

The Doctor isn't really sure what caused this series of episodes today. Though there are some clues. Last night she spit up a good amount of her Phenobarbital. This morning they sent some blood to the lab to analyze the level and it came back at 31. The Doctors want to keep the level in the low 40s. They gave her an additional does of Phenobarbital but it is slow to metabolize.

Later, they would try a oral dose of 2nd medication, Dilantin (Phenytoin). It too is slow, so eventually they put IV in and gave her that version of Dilantin (Phosphenytoin). At about 4:30pm, Claire was finally sound asleep without seizures. She has had to eat through a feeding tube for a majority of the day. While I am writing this, they are doing a Head Ultrasound to see if the hemorrhage in her brain has changed at all. We are awaiting the results of the Ultrasound. I don't expect an update until late this evening.

I want to thank you again for your prayers and the outpouring of offers of help. Truly believe, that we want to graciously accept your help. But while we are in the NICU, there is very little even we can do. Rebecca is here full time, managing her nursing and pumping schedule. I am here when I have office work to do or when I am back from visiting clients. We do get home during the night to get some sleep.

It is rather therapeutic for me to do the house work about an hours per day, so there is little to be done at the house. We aren't allowed to eat in the NICU and we don't care to spend too much time away from Claire. So many of our meals are spent in the Cafeteria of this building. It is difficult for us to accept and use meals at this time. Yesterday Rebecca and I took some time out to have a nice dinner at Alessandro's. A nice treat from Autotrader thanks to winning Sales Person of the Month (given to our entire team in the month of March--quite the story in itself).

This week I travel. But, if our prior experience is any indication, there should be very few seizures until Friday, when I return. I purchased a webcam for my wife so I could see my daughter via Skype while I am away. Please keep us in your prayers, it truly is the best gift we can receive right now.

April, 5

Little Claire had a busy day. We started with a large blood draw for many lab tests. Then went into an EEG followed immediately by an Ultrasound. The Ultrasound showed that the stroke area is continuing to shrink, which is tremendously good news.

The EEG is still showing abnormal activity and what is known as Electronic Seizures--or seizures that don't necessarily manifest in physical behavior. The Pediatric Neurologists has upped the Phenobarbital treatments and has begun consulting with a Pediatric Epilepsy Specialist at OHSU.

The Doctors have ordered an MRI for tomorrow. They believe that the reduction of the stroke area is inconsistent with the electronic seizures she has and they are going to be looking at the blood vessels around the damaged area.

For us, this means more waiting.

Easter Sunday

Easter, the day of Christ's resurrection is a day of new beginning and new life. I have thought much this year about how Westerners adopted symbols of fertility like the egg and the rabbit for this day. The life of our daughter is an incalculable blessing on this day.

Let me thank you for your continued prayer. Yesterday was a rough day. We started off with about 1-2 seizures per hour for the first 8 hours of the day. But, in no small part due to your faith and prayers we turned a corner at 4:00pm. Claire received step-up levels of Phenobarbital until her seizures stopped. She had a feeding late in the day where she was alert and interactive, giving some much needed peace of mind to her mother and I. Overnight she fed well, consistently, and had no more seizures.

Claire's activity level on Friday was likely a contributing factor to her troubles yesterday (in our opinion). Rebecca and I were starkly reminded of the frailties of her brain. We have limited how often she is held and are treating her with the delicacy of a Faberge Egg.

Claire has a very big day tomorrow. A full lab panel, an EEG, and an Ultrasound will likely be the determining factors as whether or not she can come home by the middle of the week as we hope. We ask that you pray through tomorrow during these vigorous activities.

We hope you took time this Easter to visit church and take some time with your families. Each moment is precious.

Thursday, April 1

Rebecca and I began noticing some inconsistencies with Claire’s behavior and asked the nurses about them. She was having trouble focusing on eating and had sporadic reflexes and motions---behaviors not necessarily uncommon among newborns, which is why we thought she was fine for two days. On Monday March 29, she tested high for jaundice and was placed under UV lights for treatment. She is strong and able to remove her eye protection during some of her sporadic motions. I had to adjust her position and eye wear about every five minutes. That evening, we asked that Claire be taken to the nursery so Rebecca and I could get some sleep. The nursing staff observed her having seizures and transferred her to the NICU. She was placed on a drug called Phenobarbital to stop the seizures. Tuesday morning she had a CT scan that identified she had some hemorrhaging in the left frontal lobe of her brain. They then gave her an EEG to confirm her seizures. Fortunately, this is a treatable seizure disorder. Infants are biological adaptation machines. Claire’s brain will be able to compensate for the minor damage. In most cases like this, babies end up living normal healthy lives. The trick for now is balancing the level of the medication against normal behavior. Phenobarbital acts as a sedative and is somewhat restrictive to allowing Claire to feed normally. Over Wednesday, Claire began showing signs of building a healthy resistance to the medication and began bottle feeding. This Morning, Thursday April 1, she had her feeding tube removed and we expect her to be removed from her IV sometime today. We hope to be release from NICU by the middle of next week. Please continue your prayers. They really do work! She is improving with every day. EEGs and anti-seizure medication will be a regular part of our lives over the next year. So I will try to offer consistent updates on her progress. Thank you for love and support. It warms our hearts that we have such dedicated and loving family, friends, co-workers, and clients.

As you continue to read through the updates, you will see that our journey is still in progress…

Welcome Claire Verna

Welcome Claire Verna…
(by Rebecca)

March 27, 2010…our precious baby Claire arrives! I went into labor (for real) about 10 pm on Friday night March 26. At about 4 AM on March 27, Jake decided I was in enough pain to go to the hospital…I was holding out making sure we did not get sent home!

Active labor is intense…and no amount of practiced breathing will help! I did well getting through my contractions but was ready for the epidural by the time we arrived at Salem Hospital. My labor was not difficult. At 8 cm the Dr. finally broke my water and an hour or so later it was time to push. It was discovered at the time my water broke that there was meconium in my water…meaning the baby had a bowel movement in the womb. Meconium is very dangerous if inhaled so we had a respiratory therapist and a nurse from the NICU in the room when Claire was born to suction her out and make sure she didn’t inhale the meconium.

After about an hour of pushing Claire Verna Hales was born at 2:30 PM on March 27, weighing 7 lbs. 5 oz. and measuring 20 inches long. Claire was worked on for about 30 minutes, being suctioned out and getting her respirations under control. After that time…Claire was placed on my chest and our lives were forever changed. The moment your baby is born is truly indescribable. I will cherish that memory forever and am thankful for the pictures that captured our first moments as a family.

We love you Claire Verna…more than you will ever know!


Matthew 7:7
Ask and it will be given to you; seek and you will find; knock and the door will be opened to you.

Our Miracle

Our Miracle…
(by Rebecca)

The year 2009…we will never forget it. I started the year with my laparoscopy as mentioned in the previous post, we celebrated our 10th anniversary, and…we got PREGNANT!!!

2009 started off with a bang as I prepared to have my laparoscopy. The Dr. successfully removed a small amount of endometriosis and we agreed to continue our fertility treatments.

On June 11, 2009, we celebrated our 10th wedding anniversary. For our celebration, we booked 1 week in our favorite bed and breakfast in Ashland, OR, and attended 5 plays during the Shakespeare festival. We spent tons of time relaxing, walked in Lithia Park, discovered great new restaurants, met up with some friends, and went wine tasting. During our time away from home, Jake and I discussed what we wanted to do with our attempts at starting a family. We decided for the rest of 2009 we would forgo any additional fertility treatments. To be honest we needed a break from the strict schedule we had to keep, the crazy medications, and we knew we needed to more fully rely on God…He after all is the mighty creator.

July rolled around and we went camping over the 4th of July weekend and celebrated Jake’s birthday. Jake and I had just taken up kayaking so we spent as much time on the water as we could. On July 22, I had some weird intuition about being pregnant. I took a pregnancy test on a whim expecting a negative result. I was completely shocked to find a positive result. Not believing what I saw…I drank as much water as I could and repeated the test later that evening just “knowing” it would come back negative. Come to find out…digital pregnancy tests don’t lie….there was the result…plain as day! I called my fertility specialist and went up the next morning for a blood test. I was still in awe and shock when the phone rang and on the other end I heard…”Congratulations”! I went in again 4 days later to make sure the pregnancy was growing and indeed it was. The next big step was to see a heartbeat…something that had never occurred in our previous pregnancies. 7 long weeks later…the big day arrived. We were 8 weeks pregnant and my nerves abounded. The Dr. started the ultrasound…and what seemed like an eternity I heard the Dr. say…”There is the heartbeat…do you see it?” Jake just about leapt out of his chair…he saw it before I did. Relief as well as fear swept through me…this appeared to be a good pregnancy.

At 11 weeks we received another ultrasound as I had some slight spotting. There on the screen was our precious gift…swimming about and healthy. At 18 weeks (early Nov.) the big ultrasound arrived. We got to see our precious baby…and all of the organs…all looked healthy. We decided to find out the gender…and we found that day that our little one was a girl. Claire Verna would be her name and her room was soon under construction.

The rest of my pregnancy was fine. My OB/GYN kept telling me I was good at being pregnant and he was so happy that we finally were having a baby. Though I suffered morning sickness for 12 weeks, endured terrible heartburn in the 3rd trimester, and still suffer hip pain…it was all worth it!

Psalm 139:13
For you created my inmost being; you knit me together in my mother's womb.

Meet The Hales

Who we are…
(by Rebecca)

Jake and I have been married for 11 years now…my how time has flown! We met in the fall of 1997 and began our journey together in marriage on June 11, 1999. When we married we were young and naïve, but we trusted the Lord in all things and are stronger than ever. Our journey together has taken us on many adventures and we have come out better for it. Jake and I started our life together in Portland and quickly realized that Jake needed to finish college. After about 9 months, we moved to Cottage Grove to rent a house from Jake’s grandma on their family farm. Jake enrolled in the U of O and we both commuted to Springfield to work at Sears. After about a year in Cottage Grove, the commute grew old so we moved to Eugene where we were minutes from work and the U of O. As Jake was looking for a degree and trying to peg down what he wanted to do when he “grew up” we made some great friends and learned a lot working retail. Both Jake and I gained essential life skills and lessons that we still use to this day. After finally settling down a bit and deciding to become a history major, Jake transferred to Oregon State to complete his degree. After graduating in 2003, and not knowing what to do with ourselves, Jake and I picked up and moved to Bend, OR. Jake continued his career at the time with Sears and I began a career in banking with Bank of the Cascades. In December of 2003, we decided it was time to start thinking about starting a family. A few months later, Jake and I realized that during the housing boom, Bend was not the place for us to be. We could not afford to buy a house and rent was getting out of control. Gas and groceries also cost more. We again picked up and moved to Beaverton, OR, in July 2004. Jake got a sales job and I was able to commute into downtown Portland and continue my career with Bank of the Cascades.

Early in 2005 Jake had taken a job in Salem, and we decided we were going to buy a house. So after 6 years away from “home” we began our journey back. In March 2005, we got a surprise positive pregnancy test! After over a year of trying we were going to be parents! We had found a house and were in the closing process and life was grand. We were attending church regularly again and living life to its fullest. At the beginning of June, 2005, we excitedly went to a 12 week Dr.’s appointment expecting to hear the heartbeat of our baby for the first time. When arriving at the appointment I let the Dr. know I was concerned about some spotting. She listened for the heartbeat but none was found. We were quickly sent for an ultrasound only to discover our precious baby had never really developed. I was diagnosed with a missed miscarriage. A few days later, the miscarriage occurred, as did our anniversary and we moved into our new house…what an emotional roller coaster that was! Through it all, the Lord pulled us together and kept us strong and grounded. I was especially emotional through the next few months, but with time, the wounds began to heal.

Through the rest of 2005 and into 2006 we had 3 more pregnancies that resulted in miscarriage…one of them was a twin pregnancy. After all of those losses, my OB/GYN referred us to a fertility specialist in Portland. I went through a few tests and even had a laparoscopy done in early 2009 to remove endometriosis. I was officially diagnosed with Insulin Resistance and put on Metformin to help my body better get rid of the extra insulin which can cause weight gain and infertility. For the better part of 2007 and 2008, we tried a low dose fertility pill and shots in an attempt to get pregnant.

Though our attempts to have children had proven unsuccessful, Jake and I continued to walk by faith and rely on God to answer our prayer for a family. Though my heart longed for a baby, I enjoyed everyday that Jake and I had together. We were able to immerse ourselves in activities like, camping, kayaking, attending plays, and taking care of our 2 doggies….and grow in our love of God and each other.

James 5:11
As you know, we consider blessed those who have persevered. You have heard of Job's perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy.

This Blog

Hi my name is Traci Kenitzer and this idea was put on my heart by the Lord as a direct way to bless the Hales' family. Follow along with us on their touching journey and bless them in the process. There are many ways YOU can bless this family in need.

-Click on the donation button and donate money directly to them.
(100% of donations will go directly to them and their substantial medicals bills that just continue to grow daily)

-Email in stories of hope that will be posted on the blog for other to read as well.(There are many struggling families and people out there that can always use an encouraging reminder) email to: freckles279@hotmail.com

-Email in words of encouragement that will go directly to the Hales family.
email to: freckles279@hotmail.com

-Last but not least, keep them in your prayers. They have been going through this for over two months now and it was easy to be passionate about praying for them in the very beginning, but they need it now more than ever before! Check in to get specific prayer requests when your at a loss for words.

May God's hand and blessings be over this blog and all those read it. Pass it on and share it with everyone you know that has a heart that is willing. Get involved with blessing the Hales' family and others you know in your personal life, there is always SOMETHING you can do no matter how little. You just have to have a heart that is willing. Volunteer, donate, you can even start with smiling more and being thankful for all that you have.
God bless, Traci