Thursday, September 29, 2011
Wednesday, September 28, 2011
Unfortunately for us, because we have two kids in two separate programs, we're usually unable to do all the FSP days with both Luke and Will. The closest I came was this past Friday. Will's class was set to go horseback riding again and Luke's class was scheduled to visit the Wake Forest Fire Department. The way the timing worked out, I was going to take Luke horseback riding with Will's class and then go to the fire station with Luke over Nate's lunch break (Will was still early in his B6 rebirth at this time, so we weren't sure how he would do at the fire station).
But it rained, and the horseback riding trip was cancelled. I was so disappointed! I thought it was going to be so awesome to have Luke and Will riding together. Luke was sad too, he was really looking forward to finally meeting a horse (his words). We can't wait for the riding trip to be rescheduled.
So we putzed around for a while, and Nate was able to meet Will at home for lunch. Luke and I headed off to the fire station. He seemed a little bit nervous, but settled in quickly and had a lot of questions for a friendly fire fighter about his trucks. As the rest of his class arrived, they handed out plastic fire fighter hats to all the kids. Luke wouldn't let his go.
Before they got started, they asked the kids to sit on a yellow line on the floor. The fire fighers explained what their job was, the importance of 911, and what to do in case the kids see a fire. When you have a room full of three to five year olds and a lot of excitement, those kids aren't paying too much attention. But not my Luke... he was so awed by the fire fighters and their trucks and uniforms, that when they asked the group a question, he was the only one to raise his hand.
The fire fighters showed the kids all about their protective gear. Luke was a little interested, but didn't really care too much until they told him that the fire fighters helmet had a flashlight on it. And they would let him touch it. On, off, on, off, on... they had no idea what they had done!
Luke liked those fire fighters so much that he even stopped and agreed to let me take a photo. I'm telling you - true fire fighter love. Note the hand still on the plastic fire fighter helmet.
The kids were allowed to climb up in the cab of the ladder truck. It was hard to get a good angle to snap photos, but I was able to get this one... a little out of focus, but you can see from the blurry smile on Luke's face that he's having an absolutely phenomenal time. Hand still on helmet.
Now when we drive by the fire station, Luke seems a lot more interested. He told me that he wants to go back and take them cookies. I think we can probably manage that. In Luke's eyes, they might need to reciprocate though... I'll let you have my mom's cookies if you let me ride in your truck and flash your flashlight again. Seems fair to me.
Tuesday, September 27, 2011
So because it is fun to look back, here are a couple of photos from September 27, 2003. Sometimes it is hard to recognize the youth and naivete in the faces of these photos. This certainly isn't the face that I see in the mirror each morning anymore. Lack of sleep? Stress? Remember when...
Monday, September 26, 2011
Within 36 hours of starting Will on a daily regime of 50mg vitamin B6, he was a new kid.
Its really kind of unbelievable that something as simple as a vitamin supplement could cause this kind of intense, positive reaction. So I had to give it a couple of days to be sure. Really sure.
Will went from screaming and crying all day at school to being happy again. He went from waking 8 times a night (I am not exaggerating at all) to waking once per night. I can deal with once per night.
Again... this change is all because of a single vitamin. I am in awe.
This is all super positive news because the epileptic drug Will is on - Keppra - is very effective. He has been on a low dose of the drug for a while, but after the last round of seizures, this was the drug they decided to increase to better control the seizures. If the B6 didn't work, we were going to have to scrap the Keppra and try other drugs... drugs with side effects that cannot be controlled a vitamin supplement. Drugs that we didn't really want to think about.
Will's mood at home, school, everywhere has changed. Positively. Relief for all! Of course, we're still headed to the cranial osteopath this week, too, just to make sure we keep things on the up and up!
Its nice to be able to take a sigh of relief. I can hear you exhaling around the world, readers! Thanks for the positive thoughts and prayers with this one! It has certainly been a trying time for us!
Wednesday, September 21, 2011
When you have a child with a neurological disorder with a change in personality, and especially when you have one who cannot tell you what is wrong, your first fear is that their seizures are causing their brain further damage. I know that this probably isn't the first thing that doctors or blog readers think... but its hard sometimes not to let your mind go to the worst possible cause.
Around the same time that all of this was occurring, I got an email from Kelly. Her son Connor also has seizures and is on the anti-epileptic drug Keppra, just like Will. She said that her doctors told her that vitamin B6 could help with some of the potential negative attitude side effects of Keppra. Thank goodness she wrote.
I spoke with our neurologist right away. His first thought was not that Will had long term negative effects from the seizures. He thought it was probably a reaction to the Keppra dosage increase, which is the one drug change that they made after our hospitalization last week. He said that he agreed that there were some anecdotal findings that vitamin B6 could help with the negative side effects. Apparently in some people, Keppra can reduce their body's supply of vitamin B6. This vitamin has an effect on a person's anxiety, appetite, irritability... to be depleted of it means that these effects are more likely. I drove to the pharmacy almost immediately.
We've been giving Will B6 for 24 hours now. I am not sure how long it will take for Will to have some relief. I am not sure it will work. The neurologist told us that if the B6 supplement does not improve Will's mood in a "fair amount of time," then we will have to move on to another drug. Keppra is a very good anti-epileptic drug, so we'd hate to lose the protection that it gives to Will. But he is just not acting like himself. He's miserable. Its heartbreaking.
Tuesday, September 20, 2011
Here's another photo of Matt's emergent kissy face... this time kissing my camera lens cap. Random, I know. But its a good forum to show you the emergence of Matt's first black eye. He's been climbing up on everything recently, and unfortunately hasn't yet mastered how to get down off the things he's conquered. Our efforts to keep him on the ground have been utterly futile. This is the unfortunate result of him climbing up on the play table in Luke and Will's room.
Though the colors next to the eye have not yet developed to a lovely shade of purple, there is a small cut on his eyelid and a nice bit of swelling. Reminds me of someone else I know at nearly the same age...
Monday, September 19, 2011
As we were finishing up dinner the other night, Luke caught sight of Nate's boots on the floor. For some reason, on this day, he chose to put his little feet in his daddy's big boots and attempt to walk around.
Nate got a little smile on his face and quietly said "As a father, I've always wanted something like this to happen." Luke stomped around for a while, totally enjoying the facts that he was making Nate laugh and making all kinds of noise. I just snapped as many pictures as I could! Here are some of the better ones:
Sunday, September 18, 2011
The men from the church and Will's teacher arrived on Saturday morning. Because we had bad weather and people didn't know that they would be building a ramp inside, the group was small but devoted! They quickly jumped into laying out the ramp and bringing in some supplies. Luke and Matt were happy to help. Will was in a grumpy mood (must not have understood the importance of the day or the kindness of this mission!), so he spent most of the day inside and away from strangers, saws, drills and nail guns. The men worked through the day to install the landing at the top of the ramp and started the incline down towards the floor. Despite my best attempts at keeping Will happy inside, I could not diminish the sounds of construction coming from the garage. He was miserable. We ended up leaving for a while - finally got my oil changed (small victory, long standing goal!) and picked up a new picture frame from the mall. Will seemed happy to he out of the house, and I was super glad not to have him whining.Matt and Luke stayed in the garage for most of the day with Nate and the men from the church. They loved running up and down the trailer. They ran all day. They were soaked and dirty... and they slept so well last night!Because of the small crew, the men were unable to finish in a single day. So they arrived this morning to finish up. They brought some extra help and were very efficient. Despite my best efforts to thank them and give them cookies, snacks, and drinks, they politely declined and went on with their mission.They finished and left quietly, without fan fare. We immediately took Will into the garage for some one on one time with his new ramp. The long days and the noise disappeared, and Nate drove Will up and down the ramp several times. It was so smooth and easy! What a change from our typical bump-bump-bump up and down the stairs. Will loved it. So did we. We are so grateful for the Methodist Men's Ministry at the Wake Forest United Methodist Church! We can't thank you enough for your dedication, craft, and kindness!
Friday, September 16, 2011
We have something truly exciting occurring this weekend at our house! Through Will's pre-K teacher and her church, we have been selected as a beneficiary of their handicap access ramp ministry! The ministry group is going to arrive at our house on Saturday morning and build a wheelchair access ramp in our garage for Will.
Will's new wheelchair arrives in the next month or two. Unlike his current wheelchair which weighs less than 50lb and can be separated into two pieces for easy transport, this new wheelchair weighs closer to 100lb and cannot be transported nearly as easily. The ramp is essential.
When we decided on this house, we loved it because the floorplan is all one story and doesn't have a lot of hallways. The house is about 3 steps up from outside ground level, so we always knew that we would need a ramp. We're so thankful that we are the recipients of one!
This new ramp will make it easier for us to give Will full accessibility in our home. We won't have to struggle with getting Will and his chair up and down the steps. What could be better than that?!?! We've got a lot of work to do tonight in the garage to clear the space for the new ramp. And a truly truly exciting day tomorrow!
Wednesday, September 14, 2011
Will was in a great mood when he woke up. Because of his mood and tolerance of his new medicine regimen, we decided that he was ready to go back to school today. I swear that 'Chariots of Fire' was playing in the background as Will's bus pulled up to the house and I rolled him down the driveway. Big smiles. And his bus driver was so happy to see him too.
His teacher wrote me an email towards the end of the school day to indicate that he had a great day at school. This is so great to hear after the reports that we were getting last week about his attitude! Although his appetite is still not back to 100%, he is on a good path to recovery.
Will joined Luke at physical therapy this evening. Just because we had drama earlier this week doesn't mean that there's not still important things to take care of! As much as Nate and I would like to forego all the "extraneous stuff" in the days following a hospital admission, we always seem to be able to jump back into the routine... albeit with lots of yawning.
Luke was pretty tired through PT, and came back home cranky. Matt was able to go to school today - he didn't have a fever and his Hand, Foot and Mouth blisters are starting to heal. But he was also a pretty cranky boy this evening. Dinner time was a loud, whiny struggle. No one fought going to bed either! They were all out cold by 7:30 this evening.
Because the night of seizures is so fresh in our minds, we've been checking on Will a lot this evening. He's sleeping pretty well again. Eventually we'll get to the point where we don't feel the need to check in on him every 30 minutes, but like a new parent with a sleeping infant, we're just a little afraid. I am definitely going to check into getting a seizure sensing dog... thanks everyone for the information about them!
Thanks also to everyone who sent information about the Mickey Mouse Halloween costume. Luke recently told me that he is going to be Mickey for Halloween. He wants Will to be Donald, Matt to be Goofy, and he wants Nate to be Pluto. Go figure. I asked him what was my assigned Halloween costume. He told me that I could dress up as Mommy. How fun! :)
Tuesday, September 13, 2011
Overnight last night, Will had EEG leads on his head and chest. Remarkably, he slept well. As did Nate, which isn't so remarkable. Nate has an uncanny ability to sleep anywhere and through anything.
This morning, Will woke up normally. He wasn't groggy or lethargic anymore. He was just really mad, and probably hungry. He probably wanted to be in his wheelchair and playing, but because of the EEG leads, the heart and respiration monitors, moving him from his bed to wheelchair was nearly impossible. Will cannot interact well with his world when he isn't properly supported. So the only way Nate could keep Will happy was to again break the rules and sit in Will's bed with him.
By mid morning, all the doctors had completed rounds. Because Will was now passing all of his neurological tests and was markedly improved from the day before, neurosurgery opted not to expose will to more radiation with the tracer shunt test. If he was in the middle of a shunt malfunction, he would not have been alert this morning.
This lead the team to feel that the cause of his seizures was his actual seizure disorder. The current medications are clearly not working to control his seizure disorder. So they spent the better part of the rest of the day deciding what to change about Will's seizure medications. They also left Will's EEG leads on for longer than planned, but by mid morning Nate had figured out a way to get Will in his wheelchair, even with all the leads. Will seemed a whole lot happier.
They were finally released with new medication orders and check up appointments around 5p tonight. Here is a photo that Nate emailed me before they left the hospital. Will in clothes and smiling for the first time in days!
Once Will and Nate got home, we all loved on Will. He ate some food for the first time in two days - this seemed to make him very happy. And then we went to work, putting that boy in the bath... between not bathing for many days and undergoing both a shunt tap and an EEG, there was a lot of gunk to clean out of his hair.
So while we are frustrated not to know a definitive cause of Will's seizures and ordeal over the past several days, we are happy it is over. And none too soon. Because we just don't have enough drama going on...
I got a call this morning from Matt's school. They explained to me that one of Matt's classmates was diagnosed late last night with Hand, Foot and Mouth Disease. Highly contagious to kids. Fun. Once they found out about the diagnosis this morning, they checked all 9 kids in the class. Six of them had blisters on their feet and unfortunately Matt was one of those kids. I had to come and get him.
Deep sigh. What was I supposed to do? I was at work, covering an important installation that I have been planning for 18 months... the culmination of so much work and pride. Oy. So are the decisions of a working mother. Nevermind how terrible I felt that this wasn't something I had picked up on earlier. I got Luke and Matt dressed in nearly the dark this morning... I just didn't see the blisters on his finger.
I got my project to a point where I could duck out and trekked to get Matt. On the trip, I called Stara and Joe, local friends who love their pseudo Slavik grandchildren. Thankfully they were home, available, not afraid of Hand, Foot and Mouth, and willing to take Matt for a couple of hours. Sigh. I love you guys, thanks so much for your help! Matt had a great time and I was able to complete my project. I was also able to get him to the doctor, who told me that Matt does in fact have the disease, but is passed the contagious state. So I don't have to worry about Contagion at my house.
I have been humbled by the amount of love and support coming our way... through emails, phone calls, Facebook messages. It is amazing to know how many people out there follow us, read our stories and love us from afar. I will do my best to return all those notes and phone calls in the next couple of days as things - hopefully - calm down.
When you're going through a crisis, a lot of times people don't know what to do for you. They want to help, they just don't know how. I got a lot of notes that ended with "let me know if there's anything you need." This got me thinking.
Why don't I ever have an answer for this question/comment?
So the more I thought about it, the more I realized that the things I need help with when we're in crisis are things that I don't think anyone would want to do! They're also just regular life things that I cannot get to when one or many of us is living at the hospital. Things that we would do if there was more time and less drama.
I read this article when we were in the NICU that when going through a crisis, you should create a list of things that you could use help with and keep that by the phone. I tried to do this. But it fizzled out three years ago, after Luke and Will's cluster of shunt revisions.
So here I go. My attempt at creating a list of things we need help with (either physical assistance or information assistance)!. And yes, I realize this is incredibly random.
Physical assistance we could useMy van brakes have been squeaking for 4 months. Now they squeak "fix me!"
The van is also really overdue for a oil change. Really overdue.
Otis could always use a walk, brush, snuggle, food, water...
The lawn needs to be mowed
Post office! Chris' belated birthday card is still in my purse
Need to get new drinking glasses because we keep breaking ours
Finish organizing garage and attic
Tile kitchen backsplash
Someone to pick up Luke from day care when we're stuck other places
Food in the freezer. Cheerios was my dinner the other night.
Someone to paint Matt's room. I have the paint.
Find a new CNA. Now.
Information I have been meaning to seekDoes Walmart sell a Mickey Mouse Halloween costume?
Are there dogs that can be trained to sense a seizure?
What is the best way to best publicize a blog like ours?
How on earth do regular people afford vans with wheelchair lifts?
Where should we have dinner for our upcoming 8th anniversary?
The list could go on forever. And get more random. But this is the way we work when life goes in thousands of directions... thousands of thoughts and thousands of things that have to be done another day so you can do the things that are most important.
Monday, September 12, 2011
The moment didn't last long, and he went back to being asleep. The nurse comes in to do neurological tests every two hours. She checked him at 4p and 6p - sleeping both times. Of course it didn't work out that she saw him awake! When she would do the neuro test, she would try to wake Will up by first talking to him, then kind of tickling him, then touching him more roughly, and finally shining a flashlight in his eyes. Most of the time, he barely responded. Obviously this is bothersome.
Around 7p, Will was soundly asleep when Nate came to the hospital with Luke and Matt to take over for the night shift. We decided that since Will was sleeping and little kids aren't allowed in the PICU, we would have dinner together in the cafeteria. Nate and I got choked up several times when Luke would ask where Will was. We tried to explain that Will wasn't feeling well and that he was in the hospital to make sure everything was ok. He didn't like this answer. He told us that he wanted to see Will. Tried to explain that he couldn't. He got upset, and said that he wanted to play with Will, and check on him. And kiss him to make him feel better. Oh, my boy.
We were able to diffuse the situation eventually, and Nate went up to the PICU. I took Matt and Luke home - they were asleep in the car quickly. I was so tired on the drive home that I missed the exit for 540. We're all exhausted as you can well imagine.
I got everyone inside, dressed for bed, made lunches and am finally sitting down for a couple of minutes. Nate just sent these photos from the PICU - they have Will all set up for his video EEG. Will was awake for a while with Nate, but is back to sleep again. Unfortunately Nate just said that Will vomited while sleeping just a couple of minutes ago. This is all very odd, definitely not a cut and dry event, obvious path for us or Will's doctors.
Tomorrow they are planning to do the special tracer shunt test that I mentioned earlier today. That is the last diagnostic test to run before making some serious decisions on whether Will needs a shunt revision. Thanks for all the positive thoughts, prayers and messages coming our way. Please keep them up!
Last night, Luke wet the bed a little bit (very odd) and came out of his room to tell us. When we went back to change the sheets and his bottoms, we saw that Will had recently vomited and was in the midst of a seizure. We got him up, administered his emergency medicine and waited.
It didn't work.
Will's seizures would stop for a minute or two, during which time he was somewhat lucid and able to speak. Then he would slip back into a seizure and we'd lose him for a while. After about 30 minutes, we decided that it was time to get help.
Nate took Will to our local ER. They administered a different emergency seizure medication, but Will got sick and seized again. He slept fitfully for a while, and had another seizure this morning.
If Will is going to have a seizure, it typically doesn't last this long. The duration, number of seizures, and vomiting was concerning all of us. They made the decision to transfer Will to UNC so that he could be followed more closely.
The ambulance team took such great care in transferring Will to their stretcher that he did not awaken. He remained asleep while he took the drive to Chapel Hill. I followed behind nervously in the van... reminiscing about the last time I followed an ambulance down I-40, 4 days after Will and Luke were born. Same scary feelings... you don't get used to this, no matter how many years it has been.
Will made it safely to his room at UNC, but vomited and seized again shortly after arriving. We quickly saw neurology and neurosurgery. They decided to tap Will's shunt to quickly determine if his personality changes, seizures, and vomiting were being caused by a shunt malfunction.
I tearfully helped them hold Will down while they scrubbed his head with rubbing alcohol and betadine solution, and tested the pressure in his shunt. God, I hate that. He howled. He flexed. I tried to sing, but there's little that B-I-N-G-O can do when you've been awoken from a deep sleep by a needle in your scalp.
Shortly thereafter, they took us down for x-rays. Will slept through the whole thing. There was a lot of physical manipulation going on so that they could see from his head to his belly, and he didn't flinch or complain. This, too, is concerning. The typical signs of a shunt malfunction are vomiting, headache, lethargy, and seizure.
Since we got back from x-rays, Will has been asleep. This is both good and bad. It is good in that he is getting rest that he didn't get last night. But it is bad because the longer he is asleep, the more likely that something is wrong with his shunt.
The pediatrician just came to talk to me. She said that the shunt tap and x-ray revealed that the shunt is functioning, the flow through the distal end (which goes from his scalp to his abdomen) is "sluggish." Neurosurgery wants to keep Will for observation over the next day and see if he becomes more alert. They also want more frequent neurological exams, but in order for that to happen, we must be transferred to the pediatric ICU.
If Will is still lethargic tomorrow, they will do a nuclear shunt study. We haven't ever had one of these before. It is kind of similar to a swallow study, just with the shunt instead. They will inject the shunt with some type of radioactive dye, and under x-ray, they will see how fast it is flowing. If it is, in fact, flowing sluggishly, then Will would receive his new shunt then...
Not exactly something we're looking forward to receiving... but obviously necessary. Please continue to keep Will in your thoughts and prayers during the next couple of days while he in under observation and potentially under the knife.
Sunday, September 11, 2011
Of course, he does things beyond what a 9 month old baby would do. He shows language comprehension, attention span, and choice-making abilities beyond that age. But he never really went through a lot of the developmental phases that Luke did - terrible twos, more terrible threes, etc...
That is, until NOW! Will appears to have learned all about the terrible twos. Check out this note that we got from his teacher late last week:
We've been noticing at home that he is less intolerant of situations that he previously has enjoyed (watching Mickey Mouse Clubhouse with Luke, eating meatballs, playing with preferred toys, etc.). When he is on his own with Nate or me, he is in a great mood. But introduce Luke or especially Matt, and Will turns into a bitter middle child. Its a strange turn of events! And apparently his teachers have noticed a change in him also!
Developmental delay doesn't mean developmental stoppage, so truthfully Will is just doing his own thing on his own time. Terrible twos today, maybe potty training next week...
Thursday, September 8, 2011
We're a big football family. We were all a bit nervous that there might not be any football this season, but we're happy that everyone sucked it up and agreed on their multi-million dollar contracts.
In honor of tonight's first game of the season, here are a couple shots of Matt enjoying a friendly game of tackle football with Nate. I wish I was kidding. The kid is all about tackling. Though he prefers to call it "hugging." Whatever it is, it hurts and knocks the wind out of a full sized adult.
Wednesday, September 7, 2011
While Aunt Kylie was visiting, Luke challenged her to a game of Memory. Yes, that old game is still around, and a truly loved classic. For those who don't remember, the concept is pretty simple. There about 100 cards, with about 50 different pictures on them. The cards are turned upside down, and the object is to find the matches. The one who finds the most sets of matched cards wins.
I wasn't sure if Luke truly understood the concept of the game, but I was quickly reminded that I don't know everything there is to know about my son. Within a couple of turns, Luke had already amassed a stack of Memory cards about an inch high. He would energetically cheer for himself every time he got a match.
This could have easily gotten annoying if he wasn't cheering for Kylie just as loudly as he was himself. Then it just became cute and endearing.
They played two games. Luke won them both. Now thankfully Kylie isn't a fiercely competitive person. A Memory game played between Luke and anyone from my Baldauf side of the family would have ended up much differently (read: badly - the Memory cards would have probably been tossed on the floor as Luke's competitor angrily stomped away from the table, beaten to a Memory pulp by a 4 year old).
Tuesday, September 6, 2011
On Friday while I took Matt and Luke to get Luke's new Sure Step orthotics, Nate, Ky and Will went to a park near our house. Will's teacher told me that she was very involved with getting swings for children with special needs installed at this park, so we were anxious to check it out. We've been driving 45 minutes to Cary for the special needs swings at Marla Dorrel, so anything closer would be a huge time benefit to us.
Well let's just say that they installed some swings that Will will be able to use for a long time! Better too large than too small though.
Next time we'll bring an extra strap to give Will some better posture support in the swing. But you can see from his face that he totally loved it! The park has some other jungle gyms and slides, so Luke and Matt will likely love it just like Will does. And we surely won't mind spending less time in the car, hunting out truly accessible fun for Will!