Epilepsy takes the lead.

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First Day of School

As it has been over six months since I last wrote an update, I will try to summarize briefly what has been going on in Daniel’s life since last summer. As you most likely know, we moved back to Rock Hill, South Carolina in August. It was an unexpected move, but was clearly what God was directing us to do especially for provision of medical insurance for Daniel. In an environment where it had been forecast to take 4-6 months for Medicaid to be approved, Daniel was covered within three months, retroactive six months. Amazing!

Daniel began first grade at his new school at the end of August and has been blessed by a wonderful teacher and team of therapists and administrators. While they have missed their peeps from Missouri, both children have continued to prove their resilience and fortitude through yet another adjustment. We have enjoyed living back in the neighborhood we lived in when Hannah came home in 2014. It is a great neighborhood just a half-mile walk from the kids’ school and where the kids can play in the yard, ride bikes and reconnect with old friends and make new ones. We renewed our relationships at the church we used to attend, and have been very blessed by the care of the church family through the fall and winter.

Daniel happily reconnected with his physical therapist from when he was three years old and he has been working hard in PT.  We also reconnected with our former pediatrician and neurologist. Daniel enjoyed a break from seizures from June through mid-September, but then they began again and he was having them every 2 or 3 weeks. This was troubling, and definitely impacted him academically and physically. We have seen a decline in his academic performance over the last few months which has been discouraging.  His neurologist referred us to an epileptologist – a more specialized neurologist who deals much more in depth with epilepsy.

Daniel’s first appointment with the epileptologist was in mid-December.  Honestly, it was a very hard appointment – not for Daniel, as he got to play with a child life specialist, but for me as the doctor and I talked for almost two hours. She explained Daniel’s situation to me in great detail. She reviewed his last MRI, which was from after his first seizure in 2012 when he was 16 months old. Never before had anyone gone over it so carefully with me and I won’t lie, it was crushing.  I won’t get into the details, but it explained a lot about the struggles Daniel has.

She also explained epilepsy to me much more, and though Daniel was only officially diagnosed with epilepsy in early 2018, he has had epilepsy since that very first seizure. She explained how his seizures did not really meet the qualifications for complex febrile seizures, or even an amorphous “seizure disorder” as it had been referred to for a few years, but that he has structurally based epilepsy. She also broke the hard news that this kind of epilepsy does not get better, it gets worse. The length of Daniel’s seizures, the extended recovery time for him, and the increase in frequency we had been seeing all put Daniel at higher risk than average for SUDEP, or Sudden Unexplained Death in Epilepsy. She said that it is critically important that we get Daniel’s seizures under control, which means stopped. Coming to grips with the real possibility that Daniel could die in his sleep from a seizure has been a painful process for us. We have precious friends who have lost children, and it is a fearful path that we do not want to have to walk, or the sort of club no one wants to join. I can’t say we have fully come to grips with it yet, but we are moving from a place of abject fear, terror almost, to a perspective of receiving each day as a gift, being grateful for whatever time we have together (hopefully many years ahead of us) and working out our faith at a deeper level. The information gained from this appointment has shifted our focus from cerebral palsy as Daniel’s primary diagnosis, to epilepsy being the top concern. It is certainly the most dangerous of his issues it would seem.

Following the epileptologist appointment Daniel has had a number of tests, such as a sleep study, an overnight EEG, and an MRI. He has added a second seizure medication and we are extremely thankful that he has not had a typical seizure since December 28th. Going on two months without a seizure is wonderful, but there are a number of concerning issues for us. One is that there have been some other things that have been observed in Daniel which may be other kinds of seizure activity – possibly absence seizures and sudden jerks of his legs that he can’t control. Most nights lately we have been able to work out a system where Daniel is getting better sleep, and we think the new medication is helping with that as well. There are some other symptoms that we are pursuing further explanation for. All in all, the last few months have taken us to a new level of concern for Daniel’s well being and brought into question what kind of future he will have. His academic struggles are very frustrating for him and as a result he hates trying to do his reading and math homework. He just can’t seem to recollect words he has learned in isolation when they are in context of other words, and basic math concepts are just terribly difficult for him to recall.

Earlier this week we had a follow up appointment with the sleep medicine doctor and learned that Daniel also has obstructive sleep apnea, and even when we think we’ve gotten a decent night of sleep from him, he has still had multiple issues of breathing obstruction and is not getting sound, restorative sleep. For children this is typically caused by large tonsils, which Daniel clearly has, but cerebral palsy also can contribute to this because of poor muscle control in the throat. We expect he will be having a tonsillectomy sometime in the next couple of months and will hopefully start getting better sleep after that.

For those of you who have been touched by Daniel’s enthusiasm and joyful personality, we would just ask for your support and encouragement, and especially your prayers for him. We pray each night for God’s protection over him while he sleeps and for God to supernaturally not allow any seizure activity in his body. We also pray continually for healing in his brain and body. We know from the Bible that God numbers the hairs on our heads, and he knows where each person will live and the number of their days on this earth. No one is promised long life or complete health. We are promised salvation through faith in Jesus Christ, and I am abundantly grateful that even though 2018 was a terribly difficult year for our family it is also the year that both of our children sought to give Jesus their hearts and receive forgiveness for their sins and salvation through His death and resurrection.

These are hard days, and we find ourselves very sensitive to the pain we see in our world and to fearful valleys that other families are going through with their own sick or dying children, but we live in hope, even as we process fears and feelings and complex realities. Thank you for your loving support and care for our dear boy and for our family.

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June Update & Change Is Coming

It has been a busy and stressful six months since the last progress report on Daniel.

Daniel PT baseballHe has continued to work hard in therapy, and as we approach the one year anniversary of his SDR surgery, we are grateful to step down to a once-per-week physical therapy schedule.  He continues to improve, and we are pleased to see him gaining weight and building muscle in his legs. Right after his surgery we were given knee immobilizers for him to wear at night. When he got them they fit very well around his thigh. Now, we can still get them closed at night, but he has built up so much thigh muscle that we can just barely get enough velcro to adequately secure the top of the immobilizer. This is exciting! Muscle bulk means improved strength for Daniel’s legs, and he has worked hard for all of it.

We have not seen the degree of progress in walking that we had hoped to see by this time. This doesn’t mean it won’t come, but one huge hurdle for Daniel is fear. Please pray for him about this. We want him to be able to overcome his fear of falling so he can have confidence in standing strong. The other day he walked with me from the mailbox to the front door of our house. He did not have his walker with him and he just held on to my hand. Initially he was very fearful and didn’t believe he could do it. We had just come from Vacation Bible School where they had talked and sung about Jesus being our strength when we feel powerless. We talked about it, and prayed and Daniel walked really quite well holding only on to one hand all the way to the door. He was excited and proud of himself for this accomplishment. It showed that he CAN do it, but he needs to look beyond his fear in order to do it.

He finished up his second (and last!) year of Kindergarten in May. He has had wonderful support at Independence Elementary School. We are so thankful for the loving care and awesome helpers he has had there. He is still delayed academically, and we would ask for prayer for him in this area as well. He is bright, but he has a lot of trouble with putting letters together to make words, and remembering words he has learned. He seems to have a visual processing difficulty that we have not been able to get to the bottom of yet. He has some strength in the area of math and this is an encouragement.

We have continued to struggle with his seizures throughout the first half of 2018. We have been in the hospital four times dealing with seizure-related stuff this year, and frankly we’ve had enough of it! He has had three seizures in the last month, two while we were on vacation.  All of the seizures this calendar year have happened approximately ten minutes after he has fallen asleep. We feel somewhat relaxed during waking hours at this point, but try to never be without our seizure bag which has all we need to deal with any seizure that comes up anywhere we happen to be. We continue to be in close contact with Daniel’s neurologist and epileptologist and continue to work with his medications to try to reduce the number of seizures he has been having. The seizures are serious and potentially life-threatening as they are lengthy and he stops breathing during some of them. This has been very stressful for our family and very discouraging when he has another one.

 

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Camp WeCanDu 2018

Daniel just finished up a week of camp at DASA’s (Disabled Athlete’s Sports Association) Camp WeCanDu. Those of you who follow us on Facebook have seen some pictures of a very happy boy doing some really fun stuff this week. We were so thankful that he had this experience. It was really amazing to observe this camp in motion. Daniel did not stay overnight, so each morning and evening we transported him, so we got to see more than just the initial drop-off and end of the week pick-up. Imagine a camp where the entire camp is handicap accessible. Cabins are all wheel-in, every building has no stairs, the pool has a wheel-in shallow end. Seriously,  I couldn’t have even imagined it before I saw it. Every camper has some sort of disability. Have you ever seen 80+ happy kids amongst a slew of artificial limbs, wheelchairs, various types of equipment to make activities accessible for them? It was img_8728.jpgamazing.

More amazing still were the camp counselors. You know what camp counselors are like. They are college age kids having a blast for the summer. Same here, except these young people spent their week carrying kids who couldn’t walk, dancing with kids in wheelchairs, helping kids without arms or legs to swim, dealing with their special needs, which includes things like feeding tubes, respirators, toileting issues, bowel and bladder routines that can take up to 90 minutes.

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Daniel and his counselor Katie, who worked with him most of the week

Can you imagine a group of young adults giving completely selflessly for an entire week – (round the clock we’re talking here!) – to enable children, who for 51 weeks of the year live in a world where they are different, to have a week of absolute fun with a whole bunch of kids who are all different, so they are all the same? I am brought to tears by this group of young adults. They all deserve much more than an enormous round of applause.

 

 

 

Change Is A’Comin’

Without taking the time to get into all the details, while we were on vacation God took us through a series of experiences that upset the apple cart, so to speak, and caused us to realize that He is taking us back to South Carolina. This was completely unexpected, as our plan was to stay in Missouri for some time to come, especially since Daniel’s school experience has been so very good. However, many of you know that our experience with Missouri Medicaid has been very difficult. By a providential error, Daniel received Medicaid for the first year we were here, and his SDR surgery and immediate follow-up were covered by the State of Missouri. This was a tremendous blessing. However, since October, we have not had Medicaid for Daniel, but have been put on a spend-down program where if our medical expenses exceed $3300 per month, Medicaid will kick in and cover the rest. Just before we left for vacation we learned they were bumping our spend-down amount up to $4700 monthly.  We have struggled a great deal with his medical expenses and with trying to satisfy the confusing paperwork procedures to meet the spend down requirements. We have not been able to have a personal care aide here, and this has taken its toll on David and me. Physically we are hurting. The amount of lifting and carrying and helping Daniel has been very hard, and we really need some  help at home.

South Carolina participates in a program called TEFRA/Katie Beckett Waiver, which is based entirely on the needs of the child and does not take into account the parents’ resources.  Missouri does not participate in this government program. We are on (or about to be put on) a waiting list for a waiver program here in Missouri which serves only 366 individuals in the State at a time. We would likely be waiting another year or two before Medicaid would come through for him. We would be able to have Medicaid and get an aide within 3-6 months in South Carolina. It is very interesting to see how God has worked on Daniel’s behalf through our various moves. When God took us to North Carolina, he used the waiver program (through which Daniel got NC Medicaid) to provide Daniel’s power wheelchair and our wheelchair accessible van. We would not have gotten these in either South Carolina or Missouri. When God brought us to Missouri, he completely covered Daniel’s surgery last year through the Medicaid mistake. Now, it seems he is taking us back to South Carolina and we trust that he knows what lies ahead and will continue to provide for our family.

Moving again is daunting, of course.  We have really liked living in Missouri, and are sad to leave friends and a church where we have been involved for the last two years. We are sad to leave the amazing school where Daniel has been so loved and cared for and where we expected Hannah to have the same teacher Daniel has had for those two years.  Leaving doctors and therapists who have walked with us through some challenging stuff is sad and a little threatening.  However, we have been praying for relief and it is our sense that God is answering that prayer through this move. We are planning to relocate before the middle of August for the kids to start school in South Carolina. Please be praying for us as we undergo this process. Please pray for the children as they undergo another transition. So far they are kind of sad about the prospect. It is a roller coaster of emotions for all of us. We have a lot to do, and we need all the help we can get. If you feel led to help us, please reach out. Thank you!

 

 

Daniel’s Seizures

Daniel’s seizures have been quite a distraction lately. They have been surprising, confusing, concerning and far too frequent. The game has definitely changed for us, and we are on high alert constantly, which is quite draining. I thought I would write about our experience with Daniel’s seizures to help others understand and to process and document for ourselves.

Daniel’s seizures have always been atypical. His first seizure was at 16 months of age, in August of 2012, when he was sick and had a very high fever. Febrile seizures in children are relatively common. (Febrile means having or showing symptoms of a fever. Here is a link with interesting information about febrile seizures.) These seizures are frightening, but they typically are fairly short and resolve on their own. Daniel’s seizure did not stop until we were in the ambulance on the way to the hospital after two doses of valium had been administered. The seizure lasted around 30 minutes. This is a very long seizure, and dangerous. Seizures are often described as the brain “resetting itself” and are not considered dangerous, because typically they stop within a few seconds or a minute or two. Seizures that go on for a long period of time can cause brain damage. At that time, Daniel’s seizure was described by some as a complex febrile seizure, but his neurologist felt that Daniel’s seizure was different and believed we would see more of them. She was concerned that Daniel’s seizure, though triggered by high fever, did not really fit the febrile seizure profile. It turns out she was right, but it has taken almost six years to reach certainty about it. (Here is a link to information about Types of Seizures.) We were given some basic seizure training, and Daniel was prescribed Diastat, an emergency seizure rescue medication, which we were to keep with us at all times.

Daniel’s next seizure was a year later, in July 2013, again during a time of sickness. Actually, we then learned that a seizure can be the first sign of sickness coming on. We used the Diastat, and the seizure did resolve over 10-15 minutes. Again a year went by between seizures, and then at the end of July 2014 he had seizures two days in a row, during a time of sickness with very high fever. During some of this time he was on a daily seizure medication called Keppra. We didn’t like the Keppra because it affected Daniel’s behavior, and it also didn’t prevent the seizures that came when he was sick. We decided to go without the Keppra since we didn’t want to medicate him daily for something that happened once a year and we didn’t like the behavioral effects. For over a year Daniel was not on a daily seizure medication and he did not have any seizures except when he was sick with a fever. However, in February 2016 he started having seizures monthly. He was in a preschool where kids often came in when they were sick, and he got sick over and over again. We attributed the seizures to his illnesses and continued to hope they were of the complex febrile variety. But in May he had a seizure while he was outside riding his tractor. His personal care aide was with him, thankfully, and the seizure responded to the Diastat. However, he was not sick and did not become sick. In July, he had a seizure during the opening exercises of Vacation Bible School. We administered the Diastat within two-three minutes of the start of the seizure, but the seizure did not respond well and when he was still seizing 25 minutes later the paramedics were called and we went to the hospital. Daniel did quite a bit of throwing up in the ER that evening and we ended up concluding that he was sick. However, by this time we had begun discussing the situation with his neurologist and Daniel was put back on Keppra. We moved to Missouri a month later in August 2016 while his Keppra dosage was still being regulated. We moved into a house with a pool which the kids were very excited about, but two days in a row Daniel had a seizure right after getting into the pool and we learned that a rapid drop in body temperature could trigger a seizure just like a rapid rise in temperature. We got in to see a new neurologist at St. Louis Children’s Hospital as quickly as we could and Daniel’s dosage of Keppra was increased. So did his behavior challenges, but we saw no seizure activity for 14 months until November, just two months ago.

This seizure in November really took us by surprise. I guess we had gotten complacent since we had been over a year without seizures and we hoped that Daniel had outgrown febrile seizures as many children do. As others had been, that seizure was associated with illness and fever spike as well, but because I was alone with Daniel at the time, was woken up by the seizure, and was being vomited on repeatedly, I did not get the Diastat into Daniel until after the seizure had been underway for several minutes. The seizure progressed instead of responding to the Diastat and after the paramedics arrived they administered two more doses of medication before the seizure stopped, then Daniel began to suffer respiratory distress. This whole experience was almost as scary as the first seizure he had ever had and led to further discussions with neurologists in the hospital and with Daniel’s own neurologist. We ended up deciding to change seizure medications from Keppra to Trileptal and then proceeded to make that transition over the next 9 weeks. During that time though, Daniel had another seizure which took place on Christmas Day. Daniel was not sick and did not become sick later. This was troubling. Seizures associated with illness/fever could be explained. Seizures that are not provoked or have no identifiable trigger do not support a diagnosis of  febrile seizures or an “unspecified seizure disorder”, as we had been referring to Daniel’s situation in recent years.

On January 9th, Daniel had another seizure which at the time seemed unprovoked, but the next day Daniel developed a high fever and ended up having the flu. Over a week later, after his fever had been gone for a couple of days and he had returned to school, he had another seizure the evening of January 17th. He was asleep in bed and had a new type of seizure that we had not observed before. In the past Daniel’s seizures have always been on the left side of his body and progress from the side of his mouth to his eyes, his head and neck, then his left arm and eventually left leg if the seizure is not stopped before then. This seizure seemed to involve both sides of his body and he seemed to be unable to breathe. This went on for about a minute and his face began to turn a bit grey in color. He was not vomiting, but copious amounts of saliva ran out of his mouth. His whole body was stiff and I struggled with getting his sleeper off to administer the Diastat. But then, suddenly, before the Diastat really had time to take effect, Daniel was alert and oriented and the seizure had stopped. However, Daniel could not speak normally. It seemed the left side of his tongue was paralyzed or something and his face was not symmetrical and the left side was drooping. The paramedics looked him over and we all discussed Daniel’s situation and presentation and all concurred that he needed to go to the hospital for assessment. We were all concerned that given the completely new presentation that perhaps Daniel was having some sort of stroke. Daniel was awake and conversant for the next three hours, with varying degrees of intelligibility and coherence. At some moments he could spell his name, at other moments he couldn’t. This was also very unusual for him. Typically the Diastat makes Daniel drowsy for quite a while after a seizure. This time it didn’t seem to affect him until about 10:30 or 10:45 p.m. when he finally fell asleep in the emergency room. It had already been decided that he would be admitted to the neurology floor overnight for observation and when they got us up there they tried to wake Daniel up to examine him. It took fifteen minutes to wake him up, calling his name, rubbing his limbs, pressing on his nail beds, roughly rubbing his chest. Finally he groggily came around enough to be examined. Even this was so different from what we had seen before.

Finally, late the next afternoon, two neurologists came to see us and to examine Daniel. They graciously stayed a long time, explaining things and answering our questions. They explained the nature of Daniel’s seizures, how they relate to his brain injury before birth, and how it is determined if a medication is effective or has failed. They also explained why Keppra is often the medication of choice in spite of the behavioral side effects, and how medications are selected for use then in order of their effectiveness and side effects, which can end up causing damage to other systems of the body.  This was all useful information and important for us to know though some of it was not terribly encouraging. They raised Daniel’s new seizure medication to the highest dose for his age/weight and said we’ll give it a few weeks at this level to see if it will be effective in preventing seizures for Daniel. They also explained that at this point, Daniel’s diagnosis is epilepsy. Epilepsy is diagnosed when a patient has two or more unprovoked seizures, which is the case now with Daniel. This makes us sad. We kept looking for the reason behind each seizure hoping that this would not be the case, hoping that Daniel would not be one of the children with cerebral palsy who would develop epilepsy. The diagnosis, however, really doesn’t change anything. It simply puts a name to what already is, and even though we are sad that it is the case, having the diagnosis gives us the ability to find out more information, to know what to look for, and of course, to ask more questions. We have already caught ourselves asking questions like “what does this mean for him?”, “will he not be able to drive?”, “what about his independence?”. This is natural I think, but not especially helpful at this point. Fear is crouching at my door, I can feel it, but I must not let it consume me. I believe in and serve an almighty God. A God who named Daniel eight years before he was born. A God who arranged Daniel’s birth exactly one year to the day from corporate prayer that God would give us a child. A God who made some seemingly impossible things to happen which allowed Daniel even to be conceived. A God who saves, heals, delivers and protects. I trust Him. I am anxious sometimes. I worry sometimes that we’ll miss a seizure while we are all sleeping, but ultimately I sleep at night because I entrust each of us to our loving God and I trust Him to wake us. We are careful – we use a video monitor whenever Daniel is sleeping, we train all of his babysitters before we go out, we check in with him often, maybe too often, but ultimately we know that we do not have control over this and we can live in fear and near panic, or we can be at peace trusting in God’s care. This is what we choose day by day.

December (Oops, make that January) Update

An update on Daniel’s progress is long overdue! November was a bit more eventful than we would have liked with a complicated seizure event which landed us in the hospital for a few days. This was Daniel’s first seizure in over 14 months and was a big disappointment for us. A switch in seizure medicine was prompted by this event, but was something we had been considering for a while because of the behavioral side effects of the original medicine. The switch is a 9 week process of gradually ramping up the new medication and then gradually stepping off the original medicine. We have seen a lot of tiredness and complaints of not feeling well and a lot of difficult behavior during this process. In another three weeks Daniel should be completely switched over to the new medicine and we are hopeful that getting the first medicine out of his system will be helpful with some of his behavior challenges.IMG_6865

The week after Daniel’s seizure, we had his four month follow-up with Dr. Park, the surgeon who performed the SDR surgery in July. This was actually a fun time, because we were able to visit with people who had been in the hospital with us back in the summer. Kerry is an adult who is recovering from her surgery and doing so amazingly well. Daniel and Kerry had their physical therapy evaluations together and that was really fun. Lots of laughter and cheering one another on, as well as celebrating each others progress. Little Charlotte, also in the picture to the left was there for her pre-surgery evaluation and was waiting for her surgery a few days later. img_6871.jpg

We also got to visit with Noah and his parents for a while at the hospital and met up for dinner a couple of days later.  There is a real camaraderie and understanding between the individuals and families who have gone through this fairly unusual process.

Dr. Park was comfortable with Daniel’s progress and was optimistic that Daniel will walk eventually. He encouraged us to push Daniel harder and make him walk more. We have often not pushed Daniel hard enough, and need to be more diligent and more deliberate in his exercising at home. This is a hard balance to strike, as Daniel is often tired, especially now with the medication change and with early morning therapy three days weekly. Sometimes it feels like a catch 22 as pushing him harder will yield greater endurance, but his fatigue at times makes it nearly impossible to push through a “workout” , so to speak. D Stand

He is doing well, walking around 30 minutes during a therapy session and also working on standing with gradually increasing independence.

(I thought I had actually published this update in December, but clearly had not, so here we are in January.)

Daniel is doing very well. He is walking more and more with his walker and wants to take it places and walk at times instead of using the wheelchair. This is great progress for him.

We have completed the transition to the new seizure medication, though are still tweaking the dosage as Daniel has had a couple more seizures (one on Christmas Day, seemingly unrelated to anything, and one a few days ago which we now know was related to the onset of the flu.) Getting the old medication out of Daniel’s system has been such a blessing. It is known for its behavioral side effects, and we have seen a significant improvement in Daniel’s demeanor and conduct since he has been off it. We feel in some ways that we have our sweet boy back. He is not melting down as easily and is demonstrating real willingness to cooperate and is trying hard to pull himself out of it when he is very upset or disappointed about something. This is very encouraging to us. We were getting pretty discouraged and worn down by his behavior and seeing the change after getting off the medication is a big relief.

Now, I will publish this long overdue post!

October Update

It has been a while since I posted about Daniel’s recovery and progress since his SDR surgery almost three months ago. He is well into his second year of Kindergarten, and that adjustment seems to have smoothed out at this point. He is doing well physically, and continues to work hard at physical therapy four mornings each week. He has returned to the level of strength he had prior to the surgery, and is now working on building strength. He has expressed interest in standing often, and is now able to stand in his stander up to 2 1/2 hours each day at school. That seems incredible given that just seven weeks ago he couldn’t stand in the stander longer than ten minutes. He often asks to walk up the stairs at night and does so with help, but we are seeing improvement in the way he takes the stairs – alternating his feet at times and not pausing between each stair. His knees are buckling less when he is walking at physical therapy and he has greater endurance – he walked for 40 minutes on Thursday morning at therapy.  img_6449.jpg

Last weekend Daniel attended his first session of Power Wheelchair Soccer with the organization DASA (Disabled Athletes Sports Association). His friend, Claire, from school has been playing for two years and Daniel was very enthused to join her. He had a great time and is excited for the

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season to officially start next weekend.  On Friday, Daniel participated in his school’s Eaglethon, a fun run to raise funds for the school. I had encouraged Daniel to try to walk some of it, not just use his wheelchair. He walked two laps, one using the gait trainer he has been using at school (and for a few steps he had his friend Lena walking with him, see photo) and the second lap holding the hands of his awesome para, Mrs. Pat, who was by his side the whole way. I am very pleased with Daniel’s efforts, as he really struggled and felt tired trying to walk on the grass. Having walked 40 minutes the day before at therapy, I was somewhat disheartened that he had such a hard time at the Eaglethon, but most of his walking since July has been on smooth floors indoors, so I need to cut him some slack. He really did a great job. He then hopped in his wheelchair and completed another seven laps with his classmates. Later he was out at recess when Claire’s class was doing the Eaglethon, and he joined her for another lap for a total of 10.IMG_6434_Moment

Other small areas we have seen of progress are in tall kneeling and strengthening of his core muscles. The other day he pushed a full laundry basket all the way down the hall kneeling. And just because he wanted to! I thought it was incredible. I was excited to receive this picture of Daniel in gym class as well. It just seems that he is more eager to get into various activities and participate in athletic endeavors to the best of his ability, which is really encouraging.img_6440.jpg

Thank you for your continued prayers and support for Daniel and our family.

 

Encouraged

Since I last wrote about Daniel’s recovery we have been encouraged. The progress he has made in the last two weeks is remarkable. The weakness we were dealing with right after the surgery and for the next few weeks was hard to watch day after day, and in those moments of discouragement little doubts would creep into our minds. Right around the end of July, though, his progress just began to take off and he was gaining strength every day.

On July 28th, he declared that he wanted to walk up the stairs to his room that night. Holding David’s hands, he went up the stairs – reciprocating left and right stair by stair. It was really a little shocking to see! In the morning he said he wanted to walk back down, and he did. He continues to ask if he can walk up each night and often wants to walk down in the morning instead of being carried.

The physical therapists at Children’s Hospital do a lot to make therapy fun and motivating. The other day I heard Daniel’s laugh behind the door coming into the waiting room, and then the door opened and he came through in the walker he has been using. Tied to the back of the walker was a scooter board (a.k.a. “trailer”) with several hand weights on it. He was off to sell weights around the building. He thought it was hilarious. I thought it was amazing – he was pulling at least 12 pounds of weights behind him and walking like a champ. He walked for 25 minutes straight.

He has continued to gain strength and to show motivation to do the work at therapy. Thank you for your prayers about this! Early this morning he yelled from his room, “Do I have therapy today?” David answered, “Yes, at 11 o’clock.” Daniel’s response was “Woohoo! Walking! I’m going to pull weights!” Wow. Incredible. I am so thankful that the pain is largely gone and walking is not fraught with frustration and failure any more. We are still a long way from independent walking, but it has only been a little over a month since his surgery, so the progress is very, very encouraging.

Daniel is looking forward to starting school on Wednesday. This is also an answer to prayer. The idea of repeating Kindergarten was a bitter pill for him back in May, so I am glad that he is looking forward to it. Please pray that he will not be too sad or discouraged about his friends from last year being in first grade. He will have the same teacher and paraprofessional that he had last year, and he loves them both very much, so I know he will have wonderful guidance and encouragement as the new year gets underway. We do have concerns about his learning, so we would be grateful for prayers about that as well.

Thank you for your interest and care for Daniel and for our family. The meals and help with the children has been so helpful. Both children will have three full days of school each week (Daniel will have 5, Hannah will have 3), so I am anticipating we will be able to get our ship righted and sailing on soon.

Changes

First, thank you so very much to all who have been helping us with meals and providing help with the children. Also, thank you for all the prayers on our behalf. We have had two nights of awesome sleep, and then some nights of iffy sleep,  but better than before, so thank you very much for praying for that on our behalf.

img_5989-1Second, I have been wanting to post about the changes we see in Daniel since his surgery. He is very weak, and it is discouraging to see him struggle so, but we know this is a marathon, not a sprint and we will persevere. However, there are some cool changes we have seen already and those are encouraging. You may remember this sweet picture of Daniel napping while still in the hospital. See how his fingers are laced together? He was never able to do this before because the fingers on his left hand were too tightly fisted.  I have seen him sleep this way a time or two since we’ve been home and it warms my heart. That he can do this himself as he is falling off to sleep is very exciting for us.

The muscles inside Daniel’s mouth have been challenging for him since he was born, and contributed to a lot of feeding struggles early in his life. More recently this has made it really hard to brush his teeth, because his tongue has always reflexively pushed out against the toothbrush. Since the surgery we have experienced less of this and are able to brush with less struggle. Hip hip hooray! Wasn’t expecting that little benefit!

After we were able to get Daniel up a few days after the surgery I noticed immediately that the appearance of his legs had changed. Even though he was in his wheelchair his legs looked like normal little boy legs! Because of the spasticity in his muscles, his legs always looked thin and tight. To see him up that first day with legs that looked like the relaxed legs of any other six year old was very touching.  It is a lot easier to help him get dressed without the spasticity fighting against us. He doesn’t have to deal with his feet shooting outward while he sits in his wheelchair either. It used to be that whenever he got excited about something or was working hard on something with his hands, his legs would tighten up and push out straight. That doesn’t happen anymore.

Another biggie that we have noticed is that the nighttime grinding of his teeth is almost completely gone. The tightness and muscle cramping in his legs at night have been painful for him for years and we would hear hard grinding of his teeth nightly. The week before his surgery we actually had an emergency trip to the dentist because he has a chipped tooth. The dentist attributed the chip to all the grinding Daniel does in his sleep. This tooth still needs to be taken care of, but we are not hearing the grinding from Daniel’s room any more while he sleeps. What a blessing for him to not have that particular pain any more. He is still uncomfortable from the surgery, but I am excited for him that once he is fully healed he will be able to sleep peacefully. What good news!

He has had physical therapy appointments almost every day since the surgery, and he is working hard. He is also experiencing frustration, weakness and pain as he goes through these appointments and has had some problematic behavior during some of these sessions. Please pray for him about this. Long term benefit doesn’t mean much to a six year old who is struggling and in pain, so finding motivation to do the work in the moment is something his therapist and I are working hard to discover. It can change with the day. We are using charts and goals and prizes and whatever else we can think of, but this is an especially challenging part of the recovery. I have to keep reminding myself that it has only been two weeks, and of course he is uncomfortable and it is so, so hard to do this work. I am sure when we have a few more weeks under our belts he will begin to be encouraged by his newfound strength and I am hoping this will in itself become good motivation.

We have been getting him in the swimming pool every afternoon this week as a second therapy session. He really enjoys this and I know the movement of his legs in the water is excellent for his muscle building. We have seen great improvement in his moving in the water just since Monday. Yesterday he wanted to “jump” in off the side (sitting on the edge and basically leaning forward until he falls in) over and over and over, just laughing each time and saying “I want to do it again!” I’m glad that this form of therapy is more free-form and much more fun for him.

Our whole family continues to feel stretched and overwhelmed by our situation, but it does help to focus on the positive changes we see in Daniel and that as we get further and further from the surgery date things will improve more and more. We are so grateful for your support and encouragement, and gifts and cards. Thank you! Thank you!

Ten days?!

It is so hard to believe it has been over a week since Daniel’s surgery. These last 10 days have seemed surreal in many ways. It has been hard to believe we are actually at this point. After over a year of considering SDR for Daniel, then months of deliberate focus on applying for the surgery, being evaluated and then actually preparing for it, it feels strange that we are on the other side of it now.

Things in the hospital went exactly as we were told they would. Aside from minor things like failed IV’s there were no surprises. Dr. Park’s team really knows their stuff, and have done this so many times they know just what to expect. They have done a great job of communicating these expectations to parents as well, so in spite of the challenge of going through the surgery and subsequent hospitalization, we were very well informed and things were very predictable.

Since we have been home things have been very hard and hence the lack of many posts. I have posted videos on Facebook of clips from therapy sessions, but otherwise have not had time to write about how things are going. Our nights have been very hard, with pain, discomfort in his bed, medication reactions, it seems. Last night we got a few uninterrupted hours of sleep, and are hopeful for more good nights to come.

Daniel is very weak, and this is hard for us to see and process. This weekend he cannot stand up at all, even holding on to something. Therapy is going to be hard, hard work. He has done well in therapy so far, and his therapist has said he is doing better than she expected at this point, so that is good news. We were able to get him in the pool today and will try to have him swim some each day this coming week, as it is expected to be hot. In the past swimming has really helped him, and we are hopeful that it will continue to help him build strength. He has been unwilling to eat or drink very much and so has been having some headaches as well. He is easily agitated and very uncooperative at this point. We are desperate for your prayers for our family.

We are so grateful for the help we have received with meals, and so touched by the cards and notes many of you have sent to Daniel. I had arranged for mail to be forwarded to the house from his mailbox, but we hadn’t received any forwarded mail, so I stopped by the box later last week and was so tickled to find it just full of special things. Thank you so very much!

Headed Home!

Monday morning Daniel had a physical therapy appointment and we reviewed discharge instructions then we were on our way home. The night before had been difficult with little sleep for me, as  predicted muscle spasms had kicked in. Daniel also didn’t have the epidural in any longer and after the two PT appointments on Sunday he was feeling the pain a bit more. He had asked to get up and drive his wheelchair around a bit and go back to the garden before his PT appointment Monday morning. In the midst of all that I forgot to get his pain medicine before PT, so it was a rough session. I felt terrible and it was hard to see him hurting and struggling so. Especially after all the good work I had seen him do the day before, and some awesome walking I saw his little friend Noah doing in the session just before Daniel’s, I felt so impacted by what is ahead of us and felt really discouraged. I was reminded that the three steps forward, two steps back experience is an expected part of the recovery and Daniel was really doing great, but I found myself anxious about going home and not having the support of the hospital staff. Unfortunately my tiredness was getting the best of me and this perspective hung with me the rest of the day.

Getting home was good. Daniel seemed really glad to be home and we were hopeful for a good night of sleep for all of us. Unfortunately we may have had the worst night yet. Daniel was struggling in his bed, having a hard time moving around and experiencing muscle spasms (these are expected to only last a few days). The air conditioning also went out and as the night went on it got hotter and hotter upstairs. Daniel didn’t understand and was furious that he was so hot, screaming and throwing an absolute fit for a long time. We finally got him settled and I got to sleep again around 5 a.m. David so sweetly took care of Daniel and let me sleep until 8:30, but we are just so exhausted. It was a rough day in regard to Daniel’s behavior, which I am sure is exacerbated by how he feels and that he hasn’t been getting good rest either. He had a PT appointment this afternoon and worked hard. His therapist said he was walking better than she expected him to be doing at this point so that was encouraging. The stress is definitely hitting us and I am now sick with a cough and slight fever. We are definitely feeling the pressure. We are praying for a better night tonight. My wonderful husband fixed the AC with a $10 part from Home Depot, so three cheers for David! We are very thankful for AC tonight!

Last Days in the Hospital

Sunday Daniel had two physical therapy appointments and a fair bit of time on his hands. He was handling his pain well and enjoyed visits from friends, most of whom were drawn into a game of Battleship, a game Daniel was introduced to for the first time at the hospital. Here are some cute pictures from Sunday:

Daniel looked so cute napping with his little hands folded.
He was very excited when his friends came to visit Sunday night.
Our new friend Noah had SDR surgery the day after Daniel. We enjoyed visiting the garden together.
He and Hannah had fun walking around the unit together. They were so adorable walking hand in hand.
Hanging out with little sister on his bed (that didn’t last long!)