What Happens When You Don't Plan Ahead

Our kids are busy with camps this summer. Last week was insane as all three kids were at camps in three different locations. I was basically a bus driver and not much else last week. This week, Micah and Elise are back at the camp in the park behind our house, but it is too HOT to go every day. Micah is going today because he has an indoor field trip. Elise is hanging out with me in the cool basement right now. Isaiah is at camp for the morning where they will swim and be inside.

Usually, I pack everything up for camp the night before, but I went over to a friend's house last night for awhile and completely forgot. You would think this wouldn't be so traumatic but here are a few highlights.

I raced around the house looking for the 1200 things we send with Isaiah each morning to a camp that only lasts 3 1/2 hours. We need swim diapers, kneepads, a walker, lunch, a towel, water bottle, swim vest, etc. etc. etc. Isaiah gets stressed out if I'm stressed out so he was being an overall stinker throughout the process. I did what had to be 3,000 loads of laundry last week, but somehow Isaiah didn't have any clean shirts, but he did have 56 pairs of clean shorts. I tried to figure out how I could strap a pair of shorts on as a shirt, but no luck. Instead, I put on a shirt that was two sizes too big and looks more like a dress. I also couldn't find any clean towels, really????

I get Isaiah thrown in the car, but forget to put on his sunscreen. I unbuckle him and lather it on haphazardly hoping for the best. While rubbing sunscreen on his face, I forget that he has a huge bruise on the side of his forehead and rub across it. He decides that I am the worst mother ever and promptly signs the word "hurt." Well, at least he knows how to sign that word now so that's something positive.

I take off late already only to realize I have forgotten Isaiah's lunch in the fridge so I race back to the house to get it. While on my way to camp, Micah calls to tell me he is locked out of the house and has forgotten his water bottle (more on that later). When I pull in to camp to drop Isaiah off, I open the door to discover that I never buckled him back in after the sunscreen application. I try quickly to pretend like I am unbuckling him before the camp counselor notices my transgression.

I didn't get Micah up on time or have enough time to get onto him every few minutes about staying focused to get out the door so he had to leave to walk to camp after I had already left to take Isaiah. After telling him twelve times not to forget anything because he was closing the locked door behind him, he promptly forgot his water bottle and couldn't get back in to the house to get it. When he called I wanted to be frustrated with him, but since I had forgotten Isaiah's lunch that morning it hardly seemed justified. Plus, I had forgotten to put the key that we hide outside back last week so really it's all my fault that he couldn't get back into the house.

It is now 10:00 a.m. and I'm exhausted! Are we having fun yet?

Appointment Update

Thanks to anyone who prayed for the doctor's appointment this morning. I am feeling OK about the direction we are headed in....as good as you can feel when you know your buddy has to eventually go through several surgeries.


We are going to try Isaiah on Baclofen medication by mouth. This is the medication that they may eventually give him through a pump installed in his abdomen with a catheter to his spine. For now, we are not pursuing that surgery just yet due to the potential complications involved, especially in a child Isaiah's size. We will try giving him the medication by mouth since that is safer. However, there isn't a strong feeling that oral medication will work well for several reasons (if you want details, just ask), but it is worth a try. We will be trialing that medication over the next four months if he tolerates it.


We are also looking to do serial casting on Isaiah's right ankle and calf in the fall. This is a series of casts that change every week for about six weeks. The goal of that is to lengthen Isaiah's right calf muscles. Finally, we are trying a new set of derotation straps since he is overpowering the ones we currently have. The surgeon said about five times, "I can't believe a child that small can overpower derotation straps." He also mentioned that with the kind of force that his tight muscles are putting on his bones, they don't have a chance to grow right unless we get the muscle problems sorted out.


In four months, we meet with the orthopedic surgeon again and at that time he may be recommending a derotation surgery on Isaiah's tibias. At the time of that surgery, he will also move one of Isaiah's muscles (anterior tibialis) in order to attempt to get the feet to point straight. I was encouraged to hear that they move the muscle as well during this bone surgery since the muscle is causing the bone deformity. Isaiah will eventually need this surgery in his femur as well, but the hope is that we can put that surgery off for awhile. That will be assessed in October as well.

New Things to Pray About

We have been in a period of a relative lull on the medical front for Isaiah. I'm thankful for that as the school decisions and IEP process were enough to focus on for a few months. We have an appointment with an orthopedic surgeon and a bunch of other people (therapists, orthotists, etc) on Wednesday morning to assess Isaiah's current mobility situation. Unfortunately, he is having more and more trouble with walking due to the inward rotation of his leg bones. He still flies around with his walker, but it is becoming more difficult to avoid tripping over his own inward turning feet and he is having a harder time pulling to a stand.

We will be discussing a couple options and I would appreciate prayers for wisdom for the doctor, therapists and us. One surgery we know will eventually happen is a femoral derotation osteotomy (as well as one for Isaiah's left tibia as well). This is a pretty intense surgery in which the doctors physically untwist the leg bone and re-set it into the hip socket. Major surgery, major recovery. Isaiah's neurologist wants us to wait until he is at least 8 or 9 so that the surgery won't have to possibly be repeated. His orthopedic surgeon is comfortable doing the surgery whenever Isaiah's mobility begins to go backwards (we are already getting there).

I've been wondering how this bone surgery will correct the problem when the bones are turning inward due to muscle spasticity which won't be corrected by a bone surgery. We will be discussing a couple different ideas to address the muscle issues. One of these ideas requires a different surgery that would install a medication pump to provide a continuous flow of medication into Isaiah's spine to decrease the muscle tightness.

We would really appreciate prayers for wisdom on Wednesday morning.

Impossible to Say Thanks

Isaiah receiving a high five at school

I was putting together little gift bags for the therapists, teachers, and paras at Isaiah's school last night. As I wrote a few notes, I couldn't help but feel inadequate in saying thank you for what this wonderful group has done for Isaiah this year. I kept choking back tears while trying to figure out the right words to convey our thankfulness. Teacher gifts always feel a bit funny because we don't have enough money to truly thank these wonderful women. I prayed for each of them to have a refreshing summer because they so deserve it (you too Shawna and Jen!)

I have learned many lessons in love and advocacy from these women who delighted in Isaiah this year. There are specific things that speak to Isaiah's growth from working with these wonderful women. Just this morning, he drank from an open cup, saw a bee and said "buzz," saw Miss Lora and broke out in a smile repeating "Lora, Lora, Lora," asked to walk with his canes for a few steps and concentrated on playing with a few toys. These are concrete reminders of the hard work everyone has put in to get Isaiah to do these things.

This may sound weird from a mother, but I have actually learned to enjoy Isaiah more and see the wonder in him because of the cheerleaders (i.e. teachers, therapists and paras) at his school. It's a little backward as usually the parent is the main cheerleader and trying to ensure that the people in their child's life see the unique and amazing child who may be wheeling around in a walker and trying in his own difficult way to communicate. I have played that role with others many times, wanting everyone to see beyond Isaiah's challenges to the fun and funny child inside. However, at school, the women in his life have loved him for everything he is and in doing so have reminded me to do the same.

As a parent of a child with special needs, there is always another fire to put out or another goal to work toward. The past few months have been filled with confusion over what is the best kindergarten placement for Isaiah (which I still struggle with a bit) and sadness as we watch his leg bones continue to twist and we can't stop them. We've been busy trying to figure out discipline that works for our strong willed little friend and how to help him communicate his needs more clearly as he is becoming more frustrated. For Isaiah, every new learned skill is a battle as he resists until he is able to do something with ease. With two older kids who learn everything so easily, it has been a major adjustment to realize how much work every new skill requires for Isaiah.

In the midst of it all, it becomes too easy to feel like we are always fighting an uphill battle that never ends and just to focus on the mountain that just keeps growing. His teachers and therapists have helped us to take a moment to stop and focus on the beautiful view from where we are right now. I will be forever grateful for that.

Peace Delivered

I shared earlier this week about struggling with worry and wanting more peace about Isaiah's future. I expected a vague sense of peace, but instead I got some concrete reasons to be more at peace about next year. First, a good friend who is an SLP (speech language pathologist) called me yesterday morning and encouraged me that the amount of therapy Isaiah will get next year at school will probably be just fine, especially since he is in an intensive classroom where his therapy goals will be worked on all the time.

Then last night a woman from our church watched Isaiah while we attended Micah's concert. She is currently subbing as an occupational therapist in the classroom Isaiah will be in next year. For as small of a classroom as it is (only 6-8 kids), we have now spoken with three people who have worked with his teacher. This woman had great things to say about his future teacher and how much she advocates for the kids in her classroom. Anyway, I just wanted to share the quick answer I got when crying out for peace. It's not always that quick or concrete, but I'm thankful for it this time.

On a funny note, Isaiah's answer to almost every question right now is "Daddy." Isaiah was being funny the other day and I asked "whose a silly boy?" His response was "Daddy." Today, Isaiah dumped all of his dirty clothes out of his laundry basket. When I came in to his room and asked, "What happened here?" he said, "Daddy."

Sometimes You Realize You Need to Pray More

In the past week we have talked with a couple people who have previously worked in the classroom that Isaiah will be attending next year. We have had a mixed reaction from them when learning that Isaiah will be in that classroom next year. Honestly, not a lot was said, but some worry cropped up again by what was not said. In one instance, I was waiting for the woman to exude confidence and positiveness about the teacher and classroom and while she didn't say anything negative, she also didn't say anything positive. That left my brain to connect the dots and maybe in a way that I shouldn't. I began to spin out of control with "did we make the right decision?" again, but the bottom line was we had two choices and we picked the one that seemed to be less problematic. I'm really hoping that in six months I read back through this and think, "what was I so worried about?"

Tony recorded our IEP and I listened to portions of it today. I think we should have been recording all of our major doctor appointments too because it's nice (sort of) to go back and review what was said. Of course, it got me motoring down the worry train track again and feeling like I didn't push hard enough for him, especially that I should have pushed for more therapy minutes. I've been fretting about that for the last hour or so when I was just convicted that I need to give these things up more and pray with expectation for peace.

My sister in law just got amazing news that a surgery she was most certainly going to have to schedule is no longer necessary. The doctor told her he had not seen a recovery like she has had and she immediately gave thanks to those who prayed for her. It was a great reminder to me to be in prayer for Isaiah's health and developmental needs, as well as our peace and trust in where God leads in Isaiah's life. One of my favorite verses on peace is after all from the book of Isaiah.



Isaiah 26:3

You will keep in perfect peace him whose mind is steadfast, because he trusts in you.

Another Elise Funny

Sorry to bring you back to back blog updates, but Elise's hilarity strikes again. Here is a transcript of our conversation this morning:

Elise: "How do you stop a person from talking inside your head?"

Me: "What do you mean?"

Elise: "Someone is talking in my head and they have been ever since last week. I can't get them to shut up and it's really bothering me."

Me: "What are they telling you to do?"

Elise: "Bad things"

At this point I'm beginning to get nervous about where this is headed. I hate to admit it, but I actually thought "is this an early sign of mental illness?" I know that seems way out of proportion to this simple conversation, but Elise was really animated and agitated about it and the phrase "bad things" had me nervous.

So I casually ask: "What kind of bad things is this person telling you to do?"

Elise: "The person is telling me to do chores."

Me: (Cracking up and relieved at this point) "Well, maybe the voice is just me telling you to do chores."

Elise: "No, the voice comes from somebody who looks just like me, even with the same red, curly hair."

A minute later I notice that she is putting on flip flops even though it is a P.E. day and she needs tennis shoes.

Me: "Elise, isn't today a P.E. day and you should wear your tennis shoes?"

Elise: "That's exactly what the voice in my head told me to do, but really I just want to wear flip flops and skip P.E. today. I wish I could get that voice to shut up."

Me: "I think I like this voice."

My brother Eric recently said that we are missing out on a great reality TV show by not having cameras follow Elise around all of the time. Too true!