Friday, December 16, 2011

Christmas Spirit

"All we have to decide is what to do with the time that is given to us..." -Gandalf

We often throw around phrases like these , such as "Life is too short", "No time like the present", "Carpe Diem". I think about Delaney and how she has only been with us for a mere nine months, but in the time she has sent a powerful message to people far and wide. The message has been to remind us of what is most important in life; faith, perseverance and understanding, pragmatism and love.

So often over the past nine months we wonder how we are able to keep "doing this". The truth is when faced with all of our challenges, we just do the next thing and we are not really able to think too far ahead. Lindsay and I have had so many difficult days, nights, and weeks over the last nine months, that sometimes it's difficult to comprehend. The way moments of need show up each hour and each day are small but cumulative. When her airway needs to be suctioned every 5-15 minutes, we just take it one action at a time. Sometimes we don't realize how draining it is until a few hours go by and one or both of us just snap(s). We get angry, frustrated, short tempered, and sometimes we get hyper focused on details that in the scheme of things, when we have time and space to reflect, just don't matter. Sometimes there are funny little idiosyncrasies that bother us that under normal circumstances might not have even been noticed. However at the same time we often turn to each other upon observation of the perturbation of others and think, "People need to 'get-a-clue'. On the surface sometimes we feel we have lost our faith, it happens and we are human. However, at our core I believe that we have faith that the current state of things will not go on forever; the way it has been - will change. One way or the other, God doesn't want us to live like this interminably.

However, until things do change significantly we persevere. Delaney shows us daily what it means to keep on keepin' on. She scraps and fights, and clings to life. We may never see significant changes in development, but she may surprise us. Until that time we accept what she gives us. We support her and encourage her as much as possible along the way. Our experience with Delaney can be simply described in that there are three or four distinct states of being. Sleepy, Calm, upset in pain, and agitated emotionally. Sadly, it seems that she is sleeping 60-70% of the time and about 15-20% of the time she is upset or in pain, the remainder we have a calm quiet baby, who often just stares off into space. Not really knowing what she focuses on we do try to engage her. We place picture books in her field of view, we make eye contact at close range. We don't get a lot of feedback from her but there are hints and glimmers of response.

The periods that take most of our energy and challenge us are the times when she is in pain, and times when she is agitated. During these times we manage with a combination of sedatives and pain medications. Each day we hope to use the minimal amount of medications, but more often than not we are left with no other choice. We take into account all the meds that she has and it's so sad to look at our counter top and refrigerator to see all of the bottles and syrunges, no child should need this kind of intervention; it's just not right but it's what we have to do. Sometimes we give her everything we can and nothing seems to help. Those are the hardest times, the powerlessness is overwhelming.

What saddens us deeply is that for the most part we don't get any of the typical rewards that most parents experience with their children. We don't get smiles, laughs, or many normal responses from Delaney. There are times where she will coo and respond vocally, we try so hard to build communication with her. To this point we have not been able to establish any verbal cues that relate to anything more than very simplistic parroting. Very little in the way of
non-distress related vocalizations. Despite that we still talk to her and smile at her, we laugh around her and try to stimulate as much as we can. It's just difficult to discern what may be getting through to her or not. It's frankly very challenging to engage her with consistency when we don't get the reinforcement or feedback. One piece to that puzzle has been our nurse Pat, who has been nothing short of a godsend. Not only does she handle all of her medical needs with tenderness and diligence, but she takes care of Delaney as if she were her own grandchild. She sings to her and reads to her, gives her all the attention she needs and when Delaney shows the slightest sign of engagement Pat responds with delight and encouragement. She cheers her on with every glimmer of eye contact and response to auditory stimulation.

To illustrate what we experience with her physically, Delaney has very little control over her limbs and is unable to sit on her own without assistance. This is difficult to deal with because it requires a lot of endurance to hold her for long periods of time, since she can't do any of the "work" on her own. She can move her arms in limited rhythmic motions, but cannot put much if any weight bearing pressure on them. She moves her legs in very small motions and doesn't make much effort to pull them up or lift them. Most of the large movements occur when she is upset but do not last very long. It's a combination of strength and focus. We know that her brain injury is the root cause of most if not all of her mobility concerns, but it's not clear as to what she may be able to learn (re-learn) over time. We have had physical therapy and occupational therapy in the past, but we discontinued those interventions when her prognosis was downgraded a few months ago. We may at some point reconsider, but it's stressful for us, and it's not clear how much Delaney was really improving from the intervention. We really didn't notice dramatic shifts in her motor function during the weeks and months she was receiving this intervention.

Despite her limitations we do want her to have as much quality of life as possible. So upon the suggestion of Pat, I contacted our Engineering Tech Department at Seaholm to see about fashioning a stationary chair that would provide enough supports for her to sit upright without our assistance. There are many types chairs out there in the medical equipment industry but the costs are astronomical for what in some cases appears to be a very simply design. I think much of the costs are inflated due to the unnatural influence of insurance. No one would spend thousands of dollars on equipment that probably costs a fraction of that to produce, but if insurance covers any portion of that people may feel they are getting a "deal". The materials and manufacturing of such devices cannot be that much more than a high-end car seat or a highchair, yet I've seen chairs for our purposes run as high as 2,500 dollars. Really, this is deplorable. That being said our Engineering Tech Department at Seaholm High School has taken up the challenge of recreating a similar chair for Delaney. We are so excited to see what they are able to accomplish.

All in all, I don't think we would be able to make our way through this particular period of our journey without being realistic and making a concerted effort to begin each day with love in our hearts. It begins with Lindsay and I and the love we have for each other. We take time to make this obvious. Everyday, we tell each other how much we love one another and how lucky we are to be together. We value each other. This is something that has not wavered in the least since all of the challenges with Delaney began. We have bonded even further through these tough times. It is largely due to not only the love that we have between us, but around us that has been key. It's what brought Delaney into this world, and it's what keeps her going.

I truly do not know what to say to thank all of the supporters who have provided meals, services, words of support, prayers, donations; ears, hugs, and shoulders. I often think that I would like to be able to thank everyone individually but it becomes nearly impossible to keep track of each connection we have made. At last check, we have had over 17,000 views to our blog, and many have sent emails, donations, and added Delaney and our family to prayer chains. We have had blog views from all over the United States and even across the globe; from the United Kingdom to Romania to Australia to Japan, and the even Ukraine. I hope that this post and many others will continue to reach our supporters and ensure that we love and appreciate all of the support. It's an astonishing, stunning, mind blowing experience to think that this little girl who wants nothing more than to be loved has been able to touch the world.

So when I reflect on Gandalf's words again, I can only say that within Delaney's spirit she has decided that what she 'will do with the time she has been given' is to send the message of love to all those around her. What we have done with the time we have been given with Delaney is to honor that spirit. I hope that during this time of Christmas and what ever holy days you may be celebrating that you keep the spirit of love in your hearts and minds. Perhaps it could be expressed in a simple courtesy as you drive peacefully from place to place, or as you hold the door for someone as you busily finish your Christmas shopping. Or perhaps you take a moment to pause and reflect before you pass judgement on others. Use the time that you have been given to help make things easier for one another. We get so caught up in our narcissism, we so quickly complain about mundane things. Often our facebook status updates, blogs, tweets, and text messages have transformed our digital world into a collective complaint box. I hope that with the time we have been given that we become more thoughtful about the messages create in our minds, that we share with others, and that what we intend for others to be kinder, gentler, and to begin first with love in our hearts.

Remember that life is too short, there really is no time like the present, and we all should believe in Carpe Diem...please do so with kindness and think the best of others. What we have the most control over is how we treat others and how we treat ourselves.

Merry Christmas to you all, and have a Happy New Year!

God Bless,

B & L & d

Thursday, December 1, 2011


Hi friends. Aunt Kelli here to pass along a few ways you can help Delaney and her family during the holiday season. My little Tenacious D is still struggling, as are my sister & brother-in-law. They are doing everything they can to maintain Delaney's comfort and truly appreciate every level of support you have each shared over the last several months.

First of all, I am hosting a Thirty-One Fundraiser where a portion of every purchase will go directly to the Flatter Family. Place your order by December 10th and you will receive your order in time for Christmas gift-giving. There are a ton of great products -- you could potentially get a lot of people checked off your shopping list while contributing to an important charity. There are also a few products available for $5 for every $31 you spend. You can also connect with the party via Facebook if you have any questions about ordering.

Lindsay & Brian are still accepting meals from Take Them A Meal. Last name: Flatter, Password: delaney The meals have slowed down, and as the winter months begin to hit, it will be even tougher for my sister & brother-in-law to get to the grocery store. If you are in the area, please consider signing up for a meal over the coming weeks.

If you are not in the area and do not feel the Thirty-One fundraiser will work for you at this time, but still want to contribute to Delaney's medical needs somehow, you can donate directly through PayPal by following this secure link.

I don't have much new info to share on my beautiful niece's health at this point in time (if you're in need of an update, please click on the "older posts" link at the end of this). Unfortunately, no news means not much has changed. Delaney still struggles with heart & brain damage. Lindsay & Brian are still receiving assistance from nursing care, but they are down to one nurse and less days of nursing care... which is another reason Lindsay & Brian would really appreciate meals and donations.

Thank you so much for the continued support, prayers & love you have passed along to our family during this difficult time. We appreciate each and every one of you and hope your family finds much peace & joy throughout this holiday season of love.

Tuesday, September 27, 2011

Everything We Should

I've had a hard time posting the last few weeks. In a way it seems as though I lost my "voice". There certainly hasn't been a shortage of things to write about, a lot has transpired since last month. Delaney has undergone "routine" G-Tube surgery, we've been able to employ more help at home, I've returned to work and we've experienced a series of events that have challenged our spirit and really wonder what the future holds for us.

On August 5th we brought Delaney in for her G-Tube surgery. We were nervous of course, we never know how she will respond to medical procedures and the stress of traveling to and from the hospital. I was even anticipating that if this surgery went well, and she tolerated the anesthetic we might have to seriously look at other surgeries. The surgery went well, there were no complications and when we saw her right after the surgery we were surprised at how good she looked. We held her and had to be careful with the tube site and all of the other stuff hanging off of her. It was so nice to see her face again without tube in her nose. It was a very bright visual that made us feel a little more normal. They sent us to a recovery room on the pediatric floor. It had a similar feel to the room we had on the postpartum floor, only we were sharing the room with someone else.

As Delaney began to awaken more she started getting really agitated. We had seen this before and explained to the nurse that we would probably need some Valium to help her along with pain meds. Initially we thought the meds were working but as time wore on her heart rate became increasingly of concern. She was rising up into the 180BPM range and soon ended up above 190 even over 200. Her breathing became labored as we had seen so many times before, we were getting nervous since the meds apparently weren't working. This made the nurses and residents very nervous as well, to the point where it seemed that every passerby was intent on "saving the day". It really felt as though we were losing control over the decisions that needed to be made. While some of this needed to be taken out of our hands there were many key observations that we have made over the previous months at home that were essential being ignored by the medical staff. To be brief, after everything they tried and being shifted to and from the PICU, we wound up staying in the PICU for four days. This was supposed to be a routine surgery with a 24 overnight recovery. Our poor daughter really struggled on this and needed close watchful care just to go home again. In many ways for Lindsay and I, it felt like being back at Children's Hospital again. There were times as we waited by her beside not knowing what would happen next, and feared that she might not make it.

Some interesting connections were made while we were back at Beaumont. So many nurses who knew of our story or were involved with us directly. We saw the nurse who performed the chest compressions, he seemed reluctant to make eye contact. Everyone seems to handle things differently I suppose. What was more important was that we actually ran into the doctor who was on call that night when we rushed Delaney to the hospital. It was a little difficult at first and we were a little apprehensive but felt it necessary to flag her down and ask a few questions. We managed to get some answers that don't necessarily take the pain away, but puts to rest our concerns that malpractice was the root of our problems. All these months we hadn't really known everything about what happened that night. We knew she coded and needed CPR, but we never fully understood the chain of events that got her there.

If you recall, Delaney was stable in the NICU after she had been evaluated in emergency that night. We were asked to go to the family waiting area while that prepped her for transfer to CH. During that 30 minute window we knew that they would have to intubate. We also knew that they had to give her a sedative along with the other meds designed to open up the blood vessel which was causing the coarctation of the aorta. What we didn't know was that it was the prostaglandin that truly caused her hear rate to drop this needing the CPR, and that this was necessary by hospital protocol, they had no other choice but to handle her transfer the way they did. There was also the possibility that when they intubated her it struck the vagal nerve which could have caused a drop in her heart rate as well. Despite the CPR and the oxygen which was present, Delaney suffered brain damage which might have been prevented, something we ask ourselves about every day. So we asked her also about "cool cap therapy" and wondered why that wasn't utilized or offered. The simple truth of that is that it is not standard operating procedure and Beaumont considered it experimental and were focused on her heart and the transfer to Children's. It was just not within the norm of what is done in those situations.

Not only did we meet the doctor who was on call that night, but we also reconnected with the cardiologist who was initially undertaking Delaney's care. He asked permission very humbly to speak with us, and to see our sweet angel. He was so incredibly solemn when he entered our room. He almost sheepishly approached. He walked up to each of us and gave us a hug, he apologized profusely for not being able to help her. You could see the tears welling up in his eyes. He reached into his chest pocket and said, "you know that I love her?". He pulled out a sheet of paper from his pocket and shared with us that he prays for everyone that was listed, and pointed out Delaney's name. It's very hard to have hard feelings for a man who truly did his best and bears the burden of knowing that it wasn't good enough. He was so humble and kind that it just washed away the injustice, at least for how we perceived things that fateful night. I only wish that this forgiving moment would also be enough to wash away all of the challenges we have been facing as a family. Nevertheless, we felt so unburdened by this have questions answered means the world to us.

After a much longer period of time at Beaumont than we expected we finally had the clearance to return home, the best place to recover from surgery. We too had to recover. After many sleepless nights and worry it felt so nice to be home, but we came home with some new realizations that were very difficult to accept but necessary. Given how routine the G-Tube surgery was supposed to be, a 45 minute procedure with what was supposed to be a brief recovery, we learned just how fragile Delaney is. We essentially ruled out the possibility of future surgeries. Everything else that doctors have talked about for the coarctation and the VSD would require at minimum an hour and half to catheterize and balloon the coarctation. And up to fifteen hours to correct the coarc, this is not something that Delaney can tolerate and would likely lose everything that she's gained over these many months. If she would survive at all.

So we've been addressing her needs with physical therapy, occupational therapy, Feldenkrais, and Ki. We have felt that this low invasive approach would soothe her, develop her and give her the best chance to overcome all of this. What has been making this easier is that we've been blessed with the addition of in-home nursing care for Delaney. We have two fabulous nurses who give us 8 hours a day 5-7 days a week. This has made my return to work so much easier on me knowing that Lindsay wouldn't be left alone all day with everything that Delaney needs. We've even had the chance to go out for a couple of hours in the afternoon when I get home from work. A sense of normalcy at least for brief periods of time. Our nurses have surpassed all expectations and we are so comforted to know that they go above and beyond on a daily basis, holding her, reading to her, and all of the other basic care needs.

In the last three weeks we've been noticing that Delaney has had increasing difficulty at night and we've needed to suction a lot more. This has been exhausting and painful for us but even more to see this sweet angel struggle so much. We had grown increasing concerned and felt we needed to have her heart checked and took her down to CH to find out what may be happening. On September 12th, we took her in and had an echocardiogram done. We've seen this many times in the past months so we are no strangers to looking at ventricles and valves and all the different angles, all fascinating but this visit were were worried to begin with.

As the technician was moving through the different angles and pointing out different structures we saw something that was quite astonishing, the VSD had a significant amount of tissue that was apparently trying to cover the hole. You would have to think of this as sort of a netting or mesh as there is still a significant amount of blood which is passing over the septum. Still I was feeling encouraged. It was only a few moments later that what we had feared would happen materialized. They have an algorithm which calculates the blood flow passed the coarctation, this velocity which results would be compared to previous figures. As of that Monday it was clear that Delaney's coarctation has returned. The took blood pressures on all four limbs and found a gradient of 30, this was previous 10-15, this doubling since the last check. As a result of this there is less blood flow that is perfusing to her stomach and lower extremities. The more this worsens the more trouble she will have feeding and circulating blood throughout her body. While we were there they tested Delaney's stool for blood and unfortunately it was positive. In otherwise normal healthy babies this is sometimes is an indication of an allergy to protein, sadly for us this means that her stomach is failing. The pain and irritability that we've seen in her the previous weeks was likely due to this change in cardiac status.

This news is incredibly devastating to us, we have been doing everything possibly to give her the best chance of overcoming her challenges. To give her a chance to have as much quality of life as possible. What we now have to realize is that it's not always best to do everything you can, sometimes you have to focus on everything you should.

As I bring this post to a close in the last two weeks we have hunkered down and our focus is to cherish every moment we can have with her. We are doing everything we can do keep her comfortable and calm. We don't know how long she has, we've been told weeks or months. There are times that we've felt that it would only be a matter of days, yet she continues to surprise us and perhaps there are more surprises ahead. Some days have been more challenging than others but we hope that you will be here with us in spirit during this most difficult time.

B & L & d

Thursday, August 4, 2011

Small Changes

Over the past few months we have worked tirelessly to give Delaney the best possible chance to overcome her challenges. We've seen small incremental changes in her health, her behavior, and outlook. These small changes are adding up and we hope to see them continue.

We've gone from being told that she had only days or weeks to live to graduating from hospice care to overcoming dependence on oxygen, from 'failure to thrive' to gaining as much weight as possible for an infant in her situation. She was essentially a silent baby when we were discharged from Children's, and now cries louder and louder each week. She couldn't even lift up her own head for the first two months that she was home, and now is beginning to have head control. She even held her head up for a couple of minutes with our Occupational Therapist.

She still can't suck or swallow, but we are working on that. We've been able to get 7-10 "sucks" in bursts when she is calm. Perhaps this may lead to a full recovery of that function. One hindrance to that we believe, along with many other complications, has been the Nasal Gastric tube which essentially runs down her nose and throat 24/7...such an uncomfortable thing for a baby (we know, we've tried it, and it's awful! ).

We met with a surgeon on Tuesday and amazingly we've been able to set up an appointment for a Gastric Tube (G-tube) to be placed this Friday. Which is an unheard of turn around time. The G-tube will be so much better for all of us and will lessen her discomfort. Feeding will be better and it will be easier to keep up with her growing nutritional demands. It's a six week healing process after the surgery which places a "temporary" stomach tube in which is designed to create at tract for the permanent tube. Much like a piercing in which we will need to keep clean and air out over the first few weeks following the surgery.

We continue to get as much intervention as possible with Physical Therapy, Occupational Therapy, and Ki treatments, prayers, etc. Most recently we've been made aware of a spiritual healer who we may be seeing in a couple of weeks. Another one of those "can't hurt" kind of things, and it may be worth the road trip if she will benefit.

You may have seen the video we posted recently of Delaney cooing with me. I was trying to find other ways of stimulating her since we don't have consistent feedback from her as OT relates to hearing and vision. It's very possible that she is blind and deaf. However, when I knelt down and cooed very close to her neck, close enough for her to feel the vibrations, I could tell that she responded to it. calling back in a very cute way. It's experiences like these that tell me she's "in there" trying to connect. We long for this and so much more. If she could smile and express joy it would be so rewarding for us and would go such a long way to us feeling "normal" again.

So much of the time we feel like we are floating, or drifting. We have very little to go on as far was what to expect. We accept that it is the way it will be for the foreseeable future, but it doesn't make it any easier. Sometimes we find it difficult to share in the joy that other parents express for the milestones of their children. It's not that we don't feel happy for them and we don't resent it...we just can't help but be reminded of what we "should" be experiencing.

We try so hard to stay in the moment, and focus on what we have to do "right now". Obviously we are human and fall victim to wallowing and self-pity. However what we also experience is a deep sadness for Delaney and what SHE deserves as a child. She deserves to be able to communicate easily and bond with us in normal ways. There is so much we want to teach and show her. I want her to laugh and giggle at new sights and sounds. I want her to be happy and know what it's like to hear daddy coming home from work, to run up to me and get swept up in my arms.

So please continue to pray for us and our little angel. Especially for her surgery tomorrow, that all goes well. It will occur in the morning around 10:00am so if you have a moment around that time to think of us, please pass along your positive thoughts. Pray for all of these small changes to lead to big changes and the improvement that will help make our family whole again.

God Bless,
B & L & d

Friday, July 15, 2011

Mixed Bag

We have had a lot of interesting developments and a lot of ups and downs as well in the past month. This continues to be quite the roller coaster that we certainly didn't ask to be on but, it keeps on rolling. Now that we're on it, it's not without some thrills both good and bad. I find that I have days where I can barely take it (if at all), and other days where I am in awe of our little angel. I think you'll be amazed at what has transpired.

In the past few weeks we have been slowly weaning Delaney off of the Phenobarbital, one of two ant-seizure medications that she has been prescribed. During this time we have witnessed her become both more vocal, and more irritable. Her cry has gotten stronger, which like so much we have dealt with is a double edged sword. We thought we might never hear her cry again, and while we are excited that she is communicating we are sad that she seems to be in distress or discomfort. We know that babies cry, we don't have the expectation that babies "shouldn't". However, we can tell that she is crying out of discomfort and agitation, not the sort of cry that many of you parents can relate to when a child just needs to sound off. It could be do to the reduction in Phenobarb or just her developing (on her own timetable), we just don't have an answer.

Sometimes her crying spells can last several hours to even an entire days time, no exaggeration. It is during these times where I find it very difficult to take. We hold her, swaddle her, change positions, change her diaper, give her a bath, leave her alone, give her "tummy time" or back time...nothing seems to work unless we give her Ativan. It's important that we keep her calm not only for her heart condition, but also so she doesn't burn off all the calories we are giving her. Despite the complications, we are glad to hear her voice again. It would just be nice for her to have more moments of calm vocal expression, even a "coo" here and there would be comforting to experience...we may yet.

One of the biggest developments over the past month is that last week we were given the green light to take her off of oxygen support. Since then, she has been at optimal O2 saturations everyday. A huge help to us to not be tethered and very freeing to walk her around the house without tripping. We can bring her outside without having to be aware of the cumbersome machine, tubing, or tanks. Little successes like this are huge buffers to our morale, even though the overall picture is still hugely daunting.

While her O2 has been good, we still get these moments where she has what I would describe as panicked breathing. While she is sleeping she breathes easy and calm, if she is awake and agitated she behaves as though she can't breathe very well. As if it is a struggle to pull air into her lungs. We know that her body is getting enough oxygen, so it's quite the mystery as to why she works harder than she needs to. If we give her Ativan (anti-anxiety med) and she calms down her breathing returns to normal. This tells me that there probably isn't anything structural or biological going on, but we really need a doctor to be able to tell us what this is all about. We need to ask more questions of the right people so we can get a better direction.

We met with our cardiologist two weeks ago and had mixed results. Delaney had an echocardiogram and we discovered that her Ventricular Septal Defect (VSD) has increased in size to roughly six millimeters. When I heard these results I was disappointed and worried that it meant her condition would worsen. To my surprise the blood that was shunting from left to right towards the lungs has slowed and her heart has been able to compensate more easily which is a good thing. In the same echo, we learned that there is a possibility that her Coarctation is returning. The image they were able to obtain was quite clear, however her blood pressures on all four limbs were essentially normal. The image seemed to present more constriction of the aorta, but it was difficult for Dr. Sommerfield to say for certain since the blood pressure didn't coincide with what she was seeing. Further, she said that because the structure itself is highly magnified it's difficult to ascertain from each instance if the measurement is consistent. On any given echo you can see variations of size, since the slightest movement and angle can dramatically change the image making it difficult to have consistency. She added that this latest echo may have just been a much better image than the previous. Bottom line, we just can't say whether it's better, worse, or no change.

Sadly, at this stage Delaney is still not a candidate for open heart surgery. Her brain is still too compromised to tolerate the surgery. She would likely lose everything that she has gained over the last three months. Not a prospect that Lindsay and I can accept. So we hope that all of our efforts and intervention will lead her to a point of being a candidate and give her the best possible chance for a good life.

We are scheduled to see a neurologist at U of M next Tuesday, we don't really know what to expect but hope that we can get the second opinion we need. Also, hope that we can finally have someone be able to give us some good answers to all of the question we have about her brain, behavior, outlook. At least some spectrum of behavior that will give us some guidelines. Often parents can feel as though they are flying by the seat of their pants, but it's worse for us since we find ourselves in the situation such as ours where no one seems to have even a rough outline/timeline of milestones or expectations. We've gone from early on hearing that she might not survive past a few days of our discharge from Children's to now, having grown and regained some function, with no real scope. It's a very difficult situation to be in, since obviously we want nothing more than to have a healthy Delaney that can smile and interact with us. We aren't sure we will ever have that. It doesn't mean that we don't hope for it, but we just don't know.

We have seen her make a couple of efforts to cough of late. To this point she has had a lot of difficulty with her own fluids. Still the case, but we are hoping that this behavior will continue to increase. The only problem is that even if she can regain her cough consistently she still would need to be able to swallow in order to complete the action and prevent those fluids from sliding down into her airway. To that end we will probably be getting occupational therapy back to work on these skills, amongst others.

In early August we have an appointment to have her evaluated to have a G-Tube (stomach tube) put in. This will make feeding much easier on all of us, and hopefully remove irritation from Delaney. A few weeks ago, Lindsay and I tried to put an NG tube down our own noses. Let me tell you, it’s pure torture. You would feel like you have to sneeze all the time, and it would feel as though you need to blow your nose constantly. I am sure that this has a lot to do with her discomfort and irritability but who knows. At the very least it will be yet another tube removed from her face and throat.

There are so many things that she can't do, so many critical to basic life functions. We feel badly for our little girl that has a mountain of challenges ahead of her. We are all feeling drained and having a difficult time with all of this. We try to get breaks, and we were really successful this week in that Lindsay’s father Greg, a nurse, was able to stay all day Tuesday and allowed us to travel down for a day of fun at Cedar Point. It was great. We rode all of the big rides and walked around the park like. It was a great date. We really felt it after a few hours and realized that we are the high energy kids we were in our twenties. However, we had a blast and it was really worth it.

The difficult thing is that we have to come back to the lives and challenges back home. You’d like to think that an event like this would give you a boost of psychological and physical energy but it doesn’t seem to last. We just have so much to attend to each hour, each day, and each week. Even with breaks, it’s just daunting. Dr. Sommerfield put it best. She explained to us that everything that we are doing is what would be happening in a hospital. To achieve all of that, there would be three nurses who would be getting breaks, and days off at a time. We are doing this, basically 24 hours a day 7 days a week. It’s really astonishing the level medical knowledge and expertise we have attained, knowledge that we would give up in a heartbeat to trade in for a healthy happy Delaney again.

We were pleasantly surprised to say the least at a grant we received from Katie Herb Foundation ( it was a donation to help support our medical/healthcare needs, etc. We just can’t thank them enough and will certainly put the money to good use. Take a moment if you will to support their organization in some way. They have an incredibly touching story of their own.

Anyway, we have much to do in the coming days and weeks I will keep you updated as I can. We are so grateful to all of our supporters and please keep the prayers and positive thoughts coming.


B & L & d

Sunday, June 19, 2011

Happy Father's Day!

Seems lately that I've been taking longer stretches between posts than I expected. Of course the more time away from writing creates a lot of material with so much going on. I will try to capture that as best I can as I reflect on my past, our present, and our future.

I've shared with some in writing and in person some of my history with 'parenthood'. I recalled that when I was a sophomore in high school I wrote a paper about one of my greatest wishes in life was to be a dad. No matter what career I pursued, what socioeconomic status I attained, I knew that being a dad was the most important goal. There was a period of time in my life when I wasn't sure that goal would ever be realized. Many of you know that story, and it's not my intent to recount all of the details of that. However, it's significant to me in that last year much of my personal life was coming together in ways that I for a long time didn't expect. Lindsay and I found each other, built a loving relationship and out of that created life. Our little angel had brought about so much peace and contentment when she was born. It seemed as though we were entering a time of wonder and joy that I can safely say was not matched by any previous time in my life. I might have had glimpses of this from time to time, but to hold this precious baby in my arms...there wasn't anything better.

Early on in Delaney's trauma I was in such a state of fear. I was afraid of losing her and in some of those moments I was afraid that I was losing my fatherhood. When we were in doubt as to whether she was going to survive at Beaumont I remember I was starting to prepare myself for losing my status of being dad. As if demoted in some way. What I have learned in the past few months is that even had she passed, I don't think you ever lose your "stripes". I will always be a dad, it's part of my identity now. I suppose that my brand of fatherhood comes with it a powerful feeling and fear doesn't enter into the equation, at least not as a debilitating emotion. I would say that yes, I do feel fear. Much in the way a soldier feels fear, but it's the courage that pushes us past that emotion and helps us to conquer it.

I think about that ability to counteract fear in much the same way I ran races in Cross Country. I used to get so scared before the start of the race. I would feel the blood draining from my face, and the dry mouth, and the butterflies in my stomach. I never really knew how the race was going to play out. I would wonder if my fear would get the best of me. Or would I use it as motivation. At the sound of the gun, all that fear would melt away as I took off into the first 300 meters or so. Once I got past the bulk of the runners and into the comfortable 1st third of the pack I could relax for a moment and settle into a pace. I knew that at least I wasn't boxed in with the mass of runners behind me. I would look ahead at the runners in front and make my plans to pick them off one at a time, use my breath and timing to pass at the right moment. Towards the middle of the 2nd mile I begin to think that the race will never end, I have to fight this feeling as if I am on a treadmill making no progress. For the rush of the last 600 meters will find me soon enough. This is where I loved running, that moment when I knew that most of the runners out there would likely falter. They would allow the fear to take over and somehow find satisfaction in that they were at least "out there trying". That's when I would pounce and pick them off as I approached the finish. Sometimes the more challenging the terrain of the finish, the better I performed. I needed the pressure. I might not have been a top performer in the state, but I did reasonably well. I take that attitude with me today as we face the marathon of our lives.

If we had to put a name on the goal of what would help us to maintain our energy and focus it would be 'balance'. Each week we have so much we have to attend to, from appointments with some professional we've employed in Delaney's care to the day to day feeding, diapering, suctioning, etc.. Every week we expect to see someone from our team of professionals. Our home care nurse, Cardiologist, Pulmonologist, Pediatrician, Neurologist, Physical Therapist, Ki master, all become our teammates in this relay for Delaney's life. It requires a lot of mental organization, spiritual guidance, resources, and respite. We've improved our ability to find ways to give each other breaks and get out of the house for things other than medical care. Early on we knew that this would be crucial to our being able to sustain our energy. Like many goals this is something that we aspire to achieve. We need reminders and helpers, and what we really hope is that Delaney improves the point where she needs less and less of this medical care, that we can return to 'just being parents'...which is a big enough job as it is without all of this "stuff".

Perhaps we are starting to see more signs of Delaney coming around. I won't kid you, she has a great many areas that need improvement. However, there are some really exciting albeit incremental improvements you need to know about. Last week as she was laying on her tummy, without prompting or stimulation she kept trying to pull one of her legs underneath her as if she was trying to get her leg under for support. A crucial step toward being able to support herself and perhaps, one day, crawl. While on my chest over the past several days she has noticeably picked her head way up and turned to the other cheek (with just the littlest bit of assistance). She's been vocalizing a lot more the past couple of weeks and most obviously this past week. While we typically hear this when she's upset or agitated, it's happening more and more at other times of the day. I have this feeling that all of these little developments will synthesize into much larger sweeping improvements. We keep cheering her on and with the help of all of our cheerleaders out there I know she can overcome!

One story that I thought was short and sweet was when we went to see Sensei last week. It was a normal session and as we began to wrap up I asked sensei if he was training a lot of students for Aikido. He had said that there were a few but that it will be picking up more as school lets out for summer. I then smiled and said that I might need to return and train with him again soon. He turned to me as he motioned to Delaney, "She will come train with us one day!". I think we will be happy to take him up on that offer! If anyone can help Delaney achieve that goal, he can.

Now, I was going to get more specific with some of her medical care, but today is Father's Day. So please join me in this time to celebrate and enjoy your children. Go out an play catch, throw the frisbee, get out on the boat, grill out back, be thankful your a Father, it's the greatest job in the world!

God Bless,
B & L & d

Wednesday, June 8, 2011

Time Will Tell

It's been a very busy few days here at the Flatter household. Many appointments, a lot of stress, and sprinkle in a little anxiety on top for good measure. Some days were filled with a pensive frustration, an uncertainty, where we wonder how we will keep all of this up. Perhaps all of the positive energy, thoughts, and prayers will keep this unit together and fighting - with hope.

Last week we saw a new neurologist, Dr. Finkel at the MIND clinic. I think we went to this appointment with a bit of cold expectations. We've had such disappointing interactions with neurologists to this point that we simply didn't get our hopes up. I would say that even as we entered the building to sign in I was bracing myself with the expectation of being frustrated, or otherwise perturbed. On this note, the medical profession didn't totally disappoint. We signed in at the front desk and being that there was one of the intake nurses unoccupied I took it upon myself to say hello and initiate the paperwork that we were told to arrive early to complete. The first thing out of her mouth was that 'there wasn't any' ... "Really?!". We had never been there before, surely there would be some insurance to be documented, our home address verified, contact information or that sort of thing. I questioned her. "Are you sure, we were told to arrive early to fill out paperwork". She replied, "Who are you here to see?" "Dr. Finkel", I told her. "Oh, he doesn't require any paperwork" (hold that thought). "Well, at least you will need to see my insurance card, right?" Yes, just as I suspected. I sat with her for the next five minutes doing just that.

I walked back towards Lindsay and Delaney, shaking my head and smiling sarcastically. We waited for about 10-15 minutes and eventually were called back to a room where the nurse took down some information, vitals, etc. As we were sitting in the room with her, she starts as all nurses do in this situation, "What brings you in, today?". She was very kind in her manner, I could tell that she wasn't really trying to burden us with the request, she simply had no idea. However, we have told and retold our story so many times that it becomes quite fluid in the telling. I have it down to a pretty good 5 minute rundown and could probably squeeze it into a 2-minute drill if need be. I guess what I find interesting is that lately the retelling of the story just weighs me down. I know that people can't read minds but it's become incredibly draining. It's something that we live everyday, but to repeat the tale begins to feel like little needles in my heart - stabbing. We proceeded to explain everything and you could see the shock overcome her face. She had a very sympathetic tone for the remainder of the short time that we spent with her. Remember, that 'Dr. Finkel doesn't require any paperwork'? Wrong. The nurse drops a one sheeter on us and asks us to fill it out. "Dr. Finkel likes his patients to fill out a family history". Really?! Fine.

We then wait for the doctor. He was an older gentlemen probably in his mid 60's. Well dressed in a suit which kind of took me off guard. I expected the traditional garb, but oh well. After we had already shared the story with the nurse and filled out the family history sheet, he clearly hadn't read much and we essentially had to retell the story again. I contained my frustration since I really wanted to give him the benefit of the doubt. He spoke english and from what could tell was a fairly good communicator. Score one for neurology, they are only a minus-four for the series and maybe this guy has a shot at bringing them into positive numbers. So we shared with him what we are really looking for, a second opinion. We provided him the paperwork, MRI, and EEGs from Children's and hoped that he might be able to shed some light on her brain injury, offer some sort of prognosis and give us some practical advice as to what we should be doing for her. He basically told us what most doctors have said, that "we" really don't know what will happen for Delaney. There is no crystal ball and we should continue to do what we are doing, in terms of her medical care, physical therapy, and any alternative treatments that we are comfortable with. He said that he has seen MRIs that look very bad, and children have exceeded expectations. Conversely, he has seen very normal MRIs with children have deteriorated poorly. He sort of ended by saying that we need to prepare for the worst and hope for the best. He said, and this was probably the sweetest thing he could have said - the best thing you can do is to love your daughter. No problem. All in all, better than the interaction that we had with CH neurology in that he actually talked with us but was intent on making sure that he didn't give "false hope". That's ok, we get our hope elsewhere.

In terms of next steps for neurology he indicated that he wanted us to have another EEG, which was actually done today. We went back to the MIND clinic early this morning. Lindsay held Delaney as I sat nearby and watched the computer screen tick-away reading all of the different areas of her brian activity. Being somewhat uneducated on EEG machines, I really don't know what to look for but was able to at least compare this to what I had seen on the previous three EEGs that were done at CH. The first thing that came to mind for me is that there were no periods of "inactivity" as indicated before. Her brain was constantly humming along. I might have to remind you that the Neurologist at CH said that these "things" don't improve in cases like this. Hmm, interesting.

We did get a call later this afternoon from Dr. Finkel who had a chance to read the EEG and report his findings. He indicated that over all Delaney's brain activity is very slow for her age. I'm not particularly surprised by this as she is sleepy and listless much of the day, intermixed with periods of wide-eyed movements. She's not the normal peek-a-boo baby we would love to see. However, he did say that she could begin weaning off of Phenobarbital (seizure med). Anytime I'm told we can wean off of any kind of treatment for her is a blessing. One less thing we have to attend to. So beginning tonight we started the weaning process, which will likely take the next month or two to complete. The highlight of this is that she will be under one less sedative, and perhaps we will see an increase of "normal" behavior.

On Monday of this week we saw our cardiologist Dr. Sommerfield at CH. We just love her. She is so caring, considerate, and kind. We feel that Delaney is very well cared for. She always takes time to check in with how we are doing, and really makes us feel respected. (What we don't love is that everytime we've been to CH it's been at least a four hour journey. Isn't there some way to shorten the time? Sheesh!) Sommerfield feels that we will probably only need to have another echo on her heart once a month or so due to the encouraging report that her Coarc is holding and her blood pressures are within normal limits. She is concerned about the VSD in that it is rather large and that unless or until that closes we will see some complications in her lung function which will have to be managed with the diuretics, something that we have been successful in doing to this point. Poor kid, she really needs a break.

Fortunately, we have another tremendous doctor in Devang Doshi who we saw today. He was glad that her O2 saturations are still very good even though we weaned her slightly off of the O2 level, from 1 liter/hour to .5 liter/hour. He said that her lungs sounded good and that most of the "junkiness" we hear is in her upper airway and that the lower lungs have been much clearer. He too offered concern for the VSD and that it will have to be closely monitored that her fluids are under control. Having any build up of fluid will complicate respiratory infection down the road and could be difficult for her to overcome. Doshi is also concerned with her hemoglobin levels, she was at "9" at last check and this is something that should be at "13" or so. We have her on an iron supplement and hope that this will help correct it. I was disappointed to learn that this will take months to show improved hemoglobin levels. However, Dr. Doshi is another one of these incredible professionals we are blessed to be involved with. He is incredibly compassionate and takes his time with us. He too attends to Delaney carefully and completely, yet takes the time to ensure that Lindsay and I are taking care of ourselves. He was so empathetic today and reflected how difficult it must be to be caring for our little angel. He said, "You guys are saints". It's one of those compliments that brings with it an odd feeling. We know what we are doing is difficult, and overwhelming. We have our moments where we aren't sure we can keep it up, but I don't think either of us consider it saintly...we just do. A touching compliment nevertheless.

As you know we don't leave the care of Delaney only to traditional medicine. We have been administering Ki treatments as often as we can get over to the Dojo. Unfortunately, we weren't able to get there last week so I was determined to be sure we would get back this week. So after our EEG appointment this morning we were already packed up and in the car so we drove out to the Dojo. We entered and Patrick was there to greet us shortly after we arrived. He wondered where we had been. I think they like working with who could resist our 'little d'?! Patrick set us up on the mat and began working on her. After about 20 minutes or so, Sensei switched places with him and continued the treatment. A couple of times Delaney moved her little arms and arched her back, much to the delight of Sensei who chuckled. He was very pleased with what he was seeing/feeling and when he was done turned to me and said "much a-better". With what I have seen so far with Sensei, I have total faith and trust in him. If he says things are improving, I absolutely believe him. I would say that it bears out in that her Coarc is holding, her lungs are functioning well, weaning off of O2, and weaning off of Phenobarb. Hard to argue with all of that. I am really hoping that all of the Ki treatments will heal the VSD which would be absolutely a huge win! If anyone can do it, Sensei can. I feel really good at the Dojo, it's a special place and we will go as often as possible.

As I was sharing in my last post, we have been increasingly concerned with her nighttime behavior that has her heart rate increasing along with agitation. We are doing all the right things with her medication and treating it appropriately. It's one of those things that you just can't rest until you know she's comfortable and not suffering. Her little expression on her face breaks our hearts and we want nothing but for her to be comfortable and happy. Overall, what Lindsay and I would like to see would be an increase in "normal baby behavior". I think so much of the improvement is internal. We would like to see some more obvious engagement, some approximation of communication. I think we want to know that she feels our love. I postulated tonight that perhaps these episodes are visible signs of her brain "re-wiring". Is it possible that her brain is trying to compensate and reconnect areas that have been dormant? In the process perhaps we get a very agitated and uncomfortable Delaney. Growing pains? I'm no expert and clearly this is a question we would love our neurologist to be able to answer, I'm just not convinced that anyone can answer that question. I wish this to be true. I will weather this storm with her every step of the way if it means that she will improve by some degree. Heck, I know I will weather this storm no matter what...but wouldn't that be magical if I'm right?

I mentioned in the beginning that our hope remains possible with the support of others and I am perpetually amazed by the outpouring of support from our community. The Seaholm Student Council provided us with a very generous monetary donation, we were speechless. It didn't end there. We were also graced with another extremely generous donation from the efforts of the Freshman, JV, and Varsity Girl's soccer teams. They organized a car wash in our honor and we are quite simply blown away by what they were able to bring in. It's so comforting to know that we have this kind of support. There is so much we have to do, and to be able to lessen that worry financially has been wonderful. We have so much uncertainty in our world and with all areas of support we have been given it helps us feel connected, by the uplifting spirit of strangers who we hope we can now know to be friends. One of my goals is that Delaney will be able to thank you all in some way herself someday. Doctors may not be able to predict what she will do or when, but I know with absolute certainty, that time will tell.

Ever vigilant, ever hopeful...with a little magic, TLC, and inspiration from friends near and far.

All of our Love,
B & L & d

Tuesday, May 31, 2011

My Dearest Daughter

I had this notion that would keep up with daily updates, both for myself and for all of our supporters. As you know, it's been a few days since my last update and it was really better that I waited. I needed some time away to meditate, retreat, and regroup. However, if I had to sum up the last few days in one word, discord.

If you read through the majority of my writing you will generally see optimism, motivation, and high spirits. At my core, this is unchanged and not something that I find difficult to access - I never really have. What I would say about myself of late is that I find it somewhat difficult to reconcile patience with results. I am an incredibly patient person up until I reach a point where I think that reasonable actions should be rewarded in a timely and reasonable fashion. Each day the "five-year-old" in me says that Delaney is going to wake up tomorrow crying or engaging us in some normal way. So far, over the last month that we've been home I'm sad to say that has not happened. I don't even know if this is truly a reasonable expectation, the five-year-old doesn't care.

I guess what really triggered all of this is that we have been doing everything possible to my knowledge that is safe, healthy, and hopeful for Delaney and I would like to see greater strides. No one has a timeline that we can check. The only chart that has any relevance are the growth charts with our weekly checkups - she's way behind. To hear that she is in the 3rd percentile in weight for infants her age is somewhat disheartening. However her head is doing much better growing within the 75th-80th percentile and she's grown a little over an inch since she's been home. I just wish that there was a chart that would compare her to other infants who have suffered similar traumas so we had more relevance. It makes us feel somewhat adrift. Our expectations as parents for what we should be seeing in our little girl at this stage of her life is very skewed. We've had to throw out everything that we thought we knew about "what to expect". It doesn't change the love we have for her, or the efforts we will put into her development.

We have to have different expectations or it would multiply our disappointment. It does make us sad when we settle down and take the time realize the loss therein. We feel we are really good parents and we would love to be joining in on all the same milestones that our friends are celebrating. We do look forward to adding to the family one day and hope that we will be back on track in our own experience as parents. We hope that God will grace us with another opportunity to bring life into the world and hope that he sees fit to bring us a life that will be healthy. I think we've had enough parental "excitement" for a lifetime!

We have seen some good signs, but I don't want to gloss over the truth of the matter that she is really struggling. It's so painful to see that she can't just go through her day without something medical or clinical that needs to be done to keep her comfortable, breathing, seizure-free, and growing. Over the past five nights we have seen her get very agitated with a heart rate above 180 - one night reached 200 BPM. That was downright scary. My patience had truly reached it's limit in that I just couldn't figure out what we needed to do to help her. I was so mad, I was throwing things around the house! Finally, after we administered all the medication we could and didn't see a noticeable improvement we called our home care nurse and after talking things through we waited it out another ten minutes. The meds finally kicked in, her heart rate went back to normal, and she fell asleep. I think the defining characteristic of our frustration is that in so many ways, appearance being the main factor, she looks like a normal baby. Unfortunately, she has a symphony of complicated issues going on under the surface. If only her inner functions were inline with her outward appearance, what a beautiful masterpiece that would be!

Like I said, my optimism, motivation, and spirit are still strong. We are moving forward and tomorrow we will see a neurologist at the Michigan Institute for Neurological Disorders (MIND) clinic in Farmington. One thing that we never received was a very thorough explanation of the findings in the EEGs or MRI from Children's and we hope that bringing those reports with us we will be able to get a thorough explanation, and perhaps some notion of what to do next. There may be specific areas that we need to be focusing on in physical therapy that would help us to gain ground faster. If the doctors at this clinic can help us to keep moving forward, I think I will regain some momentum. I would really like another EEG to be done. She has improved in appearance and behavior since returning from the hospital, so there would have to be some improvement in the EEG. You can't have one without the other in my non-medical opinion. I don't know if the doctor will be administering that tomorrow, but we would like that done eventually. There is some debate as to whether this should be done sooner or later, but a month's time is an eternity for an infant. I would be very surprised if we didn't see some favorable gains.

I will be taking Delaney in for more Ki treatment at some point this week. We took her four times last week and she definitely responded to it. I've even learned a bit more about administering it myself. Last Thursday, Sensei was kind enough to give me a short lesson/demonstration. He can do amazing things with his energy. If you are attuned to Ki energy, you can't resist it. He actually demonstrated in front of me and our friend Nicki the power of Ki. His partner Patrick who is also a practitioner stood up and Sensei was able to control muscles from a few feet away. There he was standing and Sensei had his arms flexing no matter how hard he resisted. After a few amazing examples of this, he turned to me and said "same-a-same, but a gentle, gentle" as he gestured to Delaney who was quietly lying on the nearby mat. I spent a few minutes at that point administering some Ki treatments to Delaney myself. I could see that something was happening. If your Ki is flowing you will look down at your hands and your skin will be somewhat mottled, my brother Sean describes it as a pattern that resembles raw ground beef. He's right! I did try it at home and I'm not sure exactly what the difference is but all the energy I felt at the Dojo, was not the same as what I felt at home. Then again, I'm not a 60-something Japanese man who has been practicing his whole life and learned Aikido from it's founder. So, I give me a little slack. If you are interested in this practice, here is the link to Sensei's dojo. What I didn't realize is that Sensei was a part of a study of Ki and it's effect on water. Sensei was involved with Dr. Masaru Emoto, who's work was made relatively famous in the movie, "What The Bleep Do We Know?". You can read about that here as well.

What I have to say as I write finish this latest post, is that my dearest Daughter is waving her hands and looking around (sometimes at me). Making some gurgling noises along with the occasional high-pitched sigh. A gentle reminder that it's all worth it.

God Bless,
B & L & d

Wednesday, May 25, 2011

Reclaiming Home, and Fostering a Healing Energy

Settling in to a better routine at home including several days of reclaiming our bed. Delaney is getting accustomed to her real crib. We had the last visit from the Occupational Therapist, two major Ki (pronounced "Key") sessions from Sensei, second Feldenkrais appointment, we made an appointment with the MIND clinic in Farmington, and a lot of positive behavioral signs from 'little d'.

Having returned to our own bed has been wonderful in a lot of ways. For the last few weeks our home has felt as though it was reduced to an apartment of sorts. We spent most of our time in the living room and kitchen. Our couch had become a bed, and we became all too comfortable with an air mattress (while quite excellent, is not meant to be a long term sleeping arrangement). Getting back our bed has also meant that we have reclaimed our house, everything feels more spacious again. I am really happy to see Delaney using her crib and making use of the room that we put so much work into. I wasn't sure that was ever going to happen and it feels very rewarding. I feel more motivated to complete the mural that I was previously so excited about. She deserves to have all of the cute amenities we had planned.

Yesterday we received the last of four visits from our OT. She has been very kind and gentle with Delaney, I think it's cute that she made a point to use her name - most usually refer to her has 'baby', 'honey', 'sweetie', which are all endearing but it's good to hear her name which we are so proud of. She was impressed with how alert she and how much spontaneous movement there was during the session. I expressed some concern about Delaney's toes and feet that appear to be getting 'tight' and curling slightly. She recommended that we massage her feet and apply gentle stretching. I certainly don't mind pampering her in this way she deserves to be spoiled a bit. She also said that she would be looking into whether it would be advisable to have braces made to prevent her feet from tightening up, we may or may not pursue this (more later).

One of the most impressive experiences through all of this would be taking a trip to the Aikido dojo in Sterling Heights. I have mentioned Ki before and have been lucky to have my brother Sean available to administer some healing energy to Delaney and even saw some impact. I wasn't quite prepared for how amazing it was to see Sensei in action and receive the treatment from a very powerful practitioner. We arrived at the dojo and were greeted by some students, Patrick, and eventually Sensei himself. I had to fill out a form agreeing to treatment and signing off that any techniques learned would only be utilized as indicated. On the form I shared that we wanted our daughter to be seen and for what reasons. We placed this on the desk and awaited our turn.

Eventually we were called over to the mat and Sensei began preparations for treatment. You could hear his rhythmic breathing and muttering to himself in Japanese. Intermixed we saw him touch his own head with a pensive look on his face as he stated "this-a paht, uh ok" then moving his hand slightly to a different part of his head "this-a paht, uh not ok'. He was mimicking on his own head where he sensed that Delaney was having problems. He then focused his attention, gesturing to his own chest. Again indicating a concern about her health and in particular her heart. The key here is that no one told him that she was having heart issues. The sheet that we filled out was never shown to him. He just knew.

From there he called over my mother, who trained with Sensei some years ago. He asked her to place left hand on a particular part of Delaney's head and then asked her to take her right hand touching her thumb to her ring finger holding them strongly together. Sensei then attempted to separate her fingers. In areas that showed weakness, Sensei could easily pull my mom's fingers apart. Conversely areas that were strong in Delaney he could not separate her fingers. Take it for what it's worth, but something was happening. He then focused on the treatments, he had mapped out where to focus his energy, his healing Ki. This went on for a good forty minutes and Delaney was relaxed and comfortable the whole time. She was breathing very easily and open. Her hands which at times are clenched were open and soft. She seemed to be soaking the energy in, much the way she was when Sean administers Ki. Sensei spent some time with her and alternated with his fellow practitioner Patrick. It has been noted that when Patrick and Sensei travel to Japan, that many people line up to see him - they feel his power in a different way than Sensei. After the treatment was completed, we asked him how often he should see Delaney. He very quickly said "ebery day you can do". And after what we experienced later that night, I will do my best to get her there as often as possible.

Later that day when we were home, I could see that Delaney was much more energized than she has been. Her eyes were very active as we have seen before, but this time the seemed much more purposeful. She definitely appeared to select what she was looking at, even if for just brief periods of time - more than I had seen previously. We were very encouraged by this but much later into the evening she seemed a bit agitated. Her heart rate increased and we could see that she was a bit irritable. In some ways, I like seeing the emotion. Her getting a little angry is a good thing, it's that fight that only our Tenacious D can muster. However this seemed to tip the scales a bit more than we would like so we administered some meds to calm her down. Within in a few minutes her heart rate calmed and she was fast asleep.

Today, we were visited by the Feldenkrais practitioner for the second time. Lisa has been wonderful with Delaney and we were excited to see what this next session would have in store. What I really like about Lisa is that she has a very positive spirit, you can tell that she is passionate about what she does. She is purposeful in her attention to detail and the behavior she is trying to stimulate in her. Each action is in tune with what Delaney is giving her. She takes the direction that she's going and alters it slightly. Encouraging the connection to larger movements, and the combination of limbs, muscle groups, and reflexes that will hopefully help her to regain strength and control. The practice is centered around retraining the brain to make the connections of movement necessary to get her back on track. Today we focused on tummy time, "discovering" facial features, and getting comfortable with rolling over. Lisa didn't disappoint and the more that I watch her in action the more I feel I can get Delaney in a routine of practicing these exercises.

From there we had a wonderful visit from our friend Nicki. She came along with baked goods to snack on and her spunky attitude for some light conversation and laughs. She also decided to come along and witness the Ki treatment for herself. Today, when we went we got a special treat of a brief Ki demonstration. She was even able to participate, despite not "knowing" exactly what she was looking it I'm sure it was neat to see Sensei in action as a "first timer". He is a very impressive man, entertaining at the very least. He is an excellent teacher and following the treatment with Delaney he was able to teach me some of the technique and how I should be using it while away from the dojo. I won't get into the details, but it was fascinating and I could definitely feel the energy in my hands and gut. I was sitting quietly and still, sweating like you wouldn't believe - very much an indicator of feeling and sharing the energy. I'm not sure my energy will feel quite as strong at home, but it certainly can't hurt. She always loves when I stroke her back and hold her in my arms, so a little more attention along with my own Ki can't be a bad thing.

When I held Delaney this evening I was just giddy. Her eyes were moving a lot and she even cracked a little of the "Elvis" smile that I like to call it. Sort of this half smirk for brief moments. It reminds me of when we first had her home and she would smile in my arms. I so long for that to return, and perhaps we are seeing some glimmer of her old self returning! As I stared at her beautiful baby blues, I decided to play with her gaze a bit to see what might happen if I covered up her field of vision. In the past it didn't matter what you did, she appeared to stare off in the same direction. What was different tonight is that when I covered up part of her field of vision, she slowly ever-so-slightly moved her eyes to "see around". As if to say "hey, your blocking my view!". She didn't do it every time, but I definitely saw something I hadn't seen before in the weeks we've been home from Children's.

I know that our prayers are being answered. Particularly those requesting that we continue to 'surround ourselves with wonderful people, so that wonderful things happen'. Sensei and Patrick are wonderful people. Had I not been centered in myself and my faith, and my belief that I will do everything in my power to help Delaney in every way, we would not have gone for the Ki treatment. If I had allowed doubt to enter into the equation, we would have stayed home. On the wall of the dojo there is a simple poster - "Ki is love". I believe that.

So the next time you send your positive energy to our family, perhaps you will be sending some Ki of your own.

God Bless,
B & L & d

Monday, May 23, 2011

Delaney Update: 5/23

Friday to Monday seemed like a long hiatus from the updates. Sure didn't want to disappoint our readers but it was greatly needed to take a step back and just "be" for a while. We've had a lot of appointments, visitors, deliveries/gifts. We re-tooled the home situation and tried to find some more avenues to rejuvenate our own resolve.

Friday morning we got ourselves together for another trek out to Children's Hospital. We thought sure this would be a much quicker visit, however the pace of the hospital won out. It was another four hours of our life between travel time, tests, and consultation. We do love Dr. Sommerfield, she is patient, kind and thorough. The short version of the story is that Delaney's heart function is responding very well to the Dijoxin. We are still watching the VSD, as there is still a significant amount of shunting between the ventricles. This leads to a lot of potential complications in her lungs, although for now her respiration is doing very well. We got some advice regarding Delaney's inability to blink which is very helpful and one we will have to watch. Due to her inability to blink, we have to be sure that her eyes remain moist. If her eyes dry out, this can cause very painful abrasions which could lead to infection, etc. So much to take care of, so much to worry about.

Later that day we returned home and received a visit from an old friend, Julie. She provided us with a lot of frozen breast milk which will really help to ensure we have enough high quality food for Delaney. Lindsay's pumping schedule is difficult to maintain, physically and emotionally. She's been keeping up, and I am so proud of her for putting this effort forth. It's so difficult to know that this essential connection between her and Delaney has been interrupted, so coldly. However, Julie's kindness is so appreciated and we are so touched that she will be a part of feeding out sweet little angel.

One oddity that was totally unexpected was that as soon as Julie entered our home I heard a loud crash from the kitchen. As I walked in, our cabinetry had crashed down on the kitchen counter! It was there, teetering on the miscellaneous items that were spread out on the countertop. For the next half-hour we tediously, carefully took out all of the dishes and placed them on the kitchen table adjacent to the little disaster. To our amazement we only lost one bowl, and our dog Ella's treat jar & food dish. Not exactly what we needed with everything that we are dealing with, but what are you gonna do? Turns out the previous owners took their "cheap" cabinetry and had it refaced with solid wood. However they didn't think to reinforce the job by screwing it into the joists, they just "trusted" the old nails to hold everything. Didn't work. In the aftermath we decided to leave it down, and placed all of our dishes on a bakers rack that we purchased from Bed Bath & Beyond, it actually makes the kitchen much brighter and more open. So, as we've been trying to focus on the old "everything happens for a reason" mentality, we can just add one more thing to that tally sheet.

We were so incredibly tired out from Friday that most of Saturday was spent in a sleepy stupor. Apart from taking care of Delaney we just crashed. We had to motivate ourselves to get out of the house and enjoy the sunshine. We had my parents over a few times watch Delaney so we could head out for a bike ride. It's always nice to get out, but we never feel we can stay away too long no matter what level of care we may have in the home. We just feel so intensely responsible. It may sound silly in some ways. What parent doesn't feel intensely responsible for their child? We just have such a heightened state, it preoccupies us all the time. It does wear on us. It's difficult to disengage. I really didn't have the energy to even write this blog, which is so soothing and therapeutic.

Escaping for brief moments in time is so important, takes the edge off. Little things here and there can bring back that energy that we so need. It's been nice to have the television, which has provided it's own level of escape. We have watched several movies, some horrible, some delightful...yet nice to shift one's focus on anything else. We laughed and giggled as we "beat each other up" on the Wii. Lindsay is quite the master of Sword Play on Wii Resort. She really relishes knocking me off the platform into the water. It's activity like that, which brings out the best in our relationship.

When we first met and the weeks and months afterward, we knew how to play, love, and care for one another. Our relationship is something special, we love each other very deeply and easily. Even through this most distressing time in our lives we have no doubt that we will remain strong in our devotion to one another and even talk about having more children - Delaney needs to have brothers and sisters! As terrifying as this is we are good at this "parenting thing", and it would be a shame if we didn't have more children for it. We love each other so much, and we know that we will get through this no matter what.

One of the most beautiful gifts we have received during this dreadful time was from my cousin Colleen. Not only was the gift itself priceless, the words she expressed were so touching. I have thought a lot about whether or not I would be specific about what she shared with us, and I've decided that I will keep that between her, Lindsay, I and close family. However, she expressed such heartfelt words of encouragement, love and support and so beautifully worded that I'm not sure I could recapture it and give it justice here. One thing that I will share is that she indicated that we were never really close. Certainly not because I wanted it that way. It's something that I had always wanted to overcome. As a young adolescent and through my adulthood I never really knew how to deal with it. I've always admired my cousin, she is beautiful, smart, and independent. I am forever thankful for this gift that connects us to not only each other, but to my Grandma McDonald who would have a big hug and kiss for us both...and as I've mentioned before was the original spitfire of the family. She is looking down and smiling I know it, she having a few words with the man upstairs on our behalf!

Today we met with Dr. Doshi regarding her pulmonary function and we started to wean off of her oxygen. She had been on 1 liter and as is currently is on .75 liters. Her O2 saturation has been holding in the mid 90s and above. We are pleased and would love to see the day where she doesn't need oxygen assistance at all. However, it's a fine balance and because she has so many issues, it's a delicate balancing act. Too much oxygen causes issues, as well as too little. If we were able to have surgery on the heart it would alleviate the "shunting" which is affecting her lung function, but to put her under anesthesia would have her take another hit to her brain, which none of us can really take at this point.

We are doing everything we can for our little girl. We can't help but think about the injustice of it all. She was a totally healthy happy baby for three weeks and then disaster struck. We had her in what should have been one of the safest places in the world for an infant in crisis. She was stable at one point and just after they began prepping her for transfer to Children's is when she crashed. Why couldn't they have just transferred her while she was stable? Change that one thing and we wouldn't be where we are today. I know it was protocol and probably 99% of the time a baby is transferred without incident...I guess we were the 1%. It's really sad when you focus on that, and we try so hard not to play that game of "what if" but how can you not?!

I find that we have come around again to an issue that I have written about before, and one that we worry about the most - her brain. All of the problems that she has faced with every part of her body are fixable. What amazes me about our little Tenacious D is that she has been hit with a ton of bricks and with help will overcome every malady that has resulted. Our most fervent prayers are that she can overcome the biggest challenge of them all and heal that delicate brain. We are doing everything we can, we hope that the physical therapy, occupational therapy, Feldenkrais, and Ki will do what science tells us isn't possible. That she will be able to form those essential connections so that she may be able to suck, swallow, hear, see, grasp, crawl, and communicate. Please pray for for these and all other essential elements of our baby's development. We don't need her to be gifted, just whole.

All of our love,
B & L & d

Friday, May 20, 2011

Delaney Update: 5/19

Today, we woke up fairly well rested. We had a smooth and easy start to the day. A pleasant visit from the Sue, our home care nurse, as well as another positive visit from the Chris our Occupational Therapist. We found a lot of reasons to smile today, and even laughed and played together.

I got about seven hours of sleep for the first time in over a month. Lindsay would have slept the same if not for having to use the breast pump for Delaney. I woke up feeling refreshed, yet I felt a little sense of panic (as usual) thinking that Delaney might need something. I checked on her, her sats were normal, but I could here a little congestion so I suctioned her airways out and she immediately sounded better. The poor thing hates it when we use that machine, but she almost "knows" that it will help there's thus look on her face as if to say, "I know you have to". Right after I laid back down and drifted off for another half hour, my body was like "oh yeah, sleep is good...we should do more of this!".

We had a simple breakfast and before long the OT was here ready to work with Delaney. She was impressed with her movements and liked her responsiveness. She focused a little more on her neck and shoulders and showed us how we can encourage her to begin lifting her head. There are several positions we need to use and give her more opportunity to try. She also cautioned that we have to pay attention to signs for when she's tired or "had enough". We probably know what to look for, but it was a good reminder.

Not too long after we received a visit from Sue the RN. We just love her, she asks all the right questions and gives us great insights every time she's here. Today she weighed her, listened to her breathing, her heart, and took blood to be tested. Her lungs sounded good but she is suggested that we use Postural Drainage and Percussion (PD&P) to help release any mucous build up. It's a small tool that is soft foam and has a cup-like interior that sends sound-waves into her lungs that gently work to move the secretions out. It's interesting that we witnessed them do this in the hospital and thought it was the tapping or patting that was effective, but it's a actually the cupping and percussive action that helps the most. So another piece to our daily regimen of care, but we are more than happy to do it.

She also took a blood sample to check for anemia since both she and Dr. O'Shea noticed that she appeared to be a bit pale. They also want to see what her electrolytes are like since this is the 2nd week on diuretics. We can easily add more iron to her diet if need be, not sure how she will get electrolytes, perhaps Pedialite...we just don't want to dilute her feeding too much with other liquids since she needs to gain weight so badly. Needless to say all of this is another blessing that we have the care that we do.

Overall, everyone who sees Delaney comments on how good she looks. We see signs of her filling out a bit more each week especially in her legs and arms, and those cute cheeks! This week she gained one ounce, so we got the green light to increase her caloric intake. It makes me so comforted to know she's gaining.

Following the visits I was really motivated to use our Costco rebate check to buy Wii! So while Lindsay stayed with Delaney I went out on a short mission. Much to my surprise Costco was totally out. I would not fail, this day! They exchanged my rebate for cash and I headed over to Best Buy, in and out.

Back home, after quickly setting things up, Lindsay and I played and laughed. We felt like kids again, for sure. I even felt like I got a bit of a workout in and believe me I could use the exercise. It's been a few weeks of stress and comfort food. As we seem to be continually adjusting to our new routine and finding respite through friends and family it gets easier and easier to find openings for leisure and fun (and hopefully exercise!). So crucial, yet not as easy to achieve as one might think.

Friday we head back to CH for a Cardiology appointment with Dr. Sommerfield. Somehow time slipped away from me and I forgot to get the x-rays sent from Beaumont to her office. I will have to be sure to make that happen tomorrow. In this visit we hope to have positive news on the state of her Coarc, we now know that the best thing for Delaney is to push off the open heart surgery as long as possible. We would more likely re-catheterize the Aorta before entering into major surgery. Due to the brain injury it is too risky to put her under anesthesia for long periods of time. Open heart bypass surgery could take as long as 16 hours. It's just too much for her, and would have her fall several steps behind where she's already wound up. Catheterization takes about an hour to an hour and a half, and recovery is much much quicker.

In other news, we are receiving a donation of frozen breast milk tomorrow and that will give us a lot more flexibility in being able to accommodate Delaney's growing demands. We are so touched to have this kind of support, since we know that breast milk is truly the best food she can get.

We know that this leg of our journey has been difficult. There are days where we are simply stunned and in disbelief as to how we even got here. We want to get off the ride, wake up from the nightmare...but that's not going to happen. What we can do is enjoy each day with the time we have with our little angel, our Tenacious D, and know that we are doing everything we can to make each day livable and find opportunities for laughter, joy, and quality-time together. Delaney is such a blessing in so many ways. She's a reminder that we all have the power to fight, to overcome, and to inspire others. She's still here, and we will lift her up at every opportunity.

We are still getting generous donations from all over the country and world. Some anonymous, others from close friends and family. We don't know quite how to thank everyone enough. Just know that we appreciate it and thank you for being a part of Delaney's recovery. Your donations, prayers, time, and words of support bring us all together. We welcome you as a part of our extended family. I think we might be on our way to some kind of world record for "neighborhood moms" (as I like to call it). There is amazing power in community, if nothing else we need to embrace that.

Anyway, it's late and I'm rambling...but happy.

B & L & d