Time Keeps on Slippin'...

This week we met about transitioning Levi into a Headstart preschool since this May he will turn three and will no longer be eligible for the therapy program he is currently in. I soaked up each moment with these two this week, constantly thinking about how fast this is going by.

They are growing so quickly. These little hands that used to be so weak are now opening doors all around the house, holding a toothbrush with ease, and shooting balls through miniature basketball hoops.

 This little man is sounding out words and telling jokes.

I pray each day that I use my time with them wisely and never take it for granted. I am so blessed to have them and to have a spouse that makes such a great father.

Adam Update:

We got his blood work results back, and it does seem like strep was the cause of his problems. The pediatrician wants to do more blood work in a few weeks to get a more definitive answer. Adam has has dramatically improved in all areas. His fever last week was not another bout of strep, and he is feeling better. I think it was just a short-lived cold or virus. He is going to take 6 months of antibiotics, which will give us some time to decide what to do next, knowing that if his condition returns, it is likely to be worse and may not go away. Please pray that he never has another flare-up! It was such a scary experience, and we certainly do not want him to have to deal with any of that ever again.

Enjoy the rest of your week. We've got a birthday to celebrate tomorrow. Wes turns 39!

Where Do We Go from Here?

Adam has improved even more since my last post. Today, I didn't notice any tics until late morning, and normally I see them right away. He still has some jerky movements and a few tics here and there but nothing at all like we were seeing. Thank you so much for praying for him and for the cards and kind words so many of you have sent our way.

We saw the pediatrician today and are trying to decide what to do next to prevent a relapse. Today was his last day of antibiotic. She was going to call to get Adam's test results back from the hospital but seems to think that strep is to blame. She even wrote P.A.N.D.A.S. on his check-out paperwork and had the rest of us go get swabbed for strep to see if we are carriers.(The quick swabs were negative, but they did a culture that should come back in a few days.) Even the children diagnosed with P.A.N.D.A.S. that respond well to antibiotics can expect a 5-6 week episode that gradually dies out. The P.A.N.D.A.S. Network website reports that "'low level anxiety and OCD/TIC issues may remain permanently or fade away after several weeks or months." If they are exposed to strep again, they are at risk for developing a more severe reaction. It is very important to protect a child with P.A.N.D.A.S. from strep during their first year of healing from a flare-up, so some children remain on antibiotics long-term.

The pediatrician texted me earlier tonight to get my email, so I will let you know what she thinks we should do when I hear from her.

We recently had the pleasure of having six extra people in our home for four days. This is my favorite friend in all the world.

Good photography, Addy!

I don't ever worry about telling anyone that, because everyone knows it's true. There is no other friend that can make me laugh as much as she does and no one else makes me feel closer to God. Pretty good qualities to have in a friend, wouldn't you say? Her husband is just as great, and our families love being together.

Her husband preached for our congregation Sunday morning and spoke at a youth rally while they were here. He is an excellent speaker, and his deep concern for the souls of others is evident in his words and actions.

Years ago, Amy told me that she was praying that I would be able to have a child and that she'd have another child shortly after. I had been longing for years to become a mother, and she wanted another child. She wanted to get pregnant again but wanted it to happen for me first, so that is what she prayed for. Soon after that prayer, I did get pregnant...three months later, so did she!

Now we are praying we can one day be in-laws.

So far so good!

Here are some other pics from this weekend.

Levi reading our picture Bible...

 and cheesing for the camera...

Here he is in Bible class the same night.

Kisses from his sweetheart, Chelsea, at the youth rally

 

This next picture is one of my favorites. Levi was squirming around and was about to slide out of Addy's hands. So funny that her expression was captured.

Wes is feeling bad. He actually got swabbed for the flu today when they swabbed for strep. Adam went to bed with a cough and a fever. Levi started having a runny nose yesterday, and my throat hurts. Lovely.

My mom had a thirty-one party recently and got me a skirt purse. It took me awhile to decide what to get embroidered on it, but I think this should do the trick...

Have a great rest of the week! I'll touch base again soon.

Progress?

This is Adam's fifth day of antibiotic. He has been having symptoms that I have not talked to many people about because they have been so upsetting to me. In addition to the physical issues (which there have been more of this week), he has been hyperactive, impulsive, easily upset, and has a hard time following directions that he usually doesn't have trouble with. He threw a fit last night because he didn't want to go to bed. He flailed around and gave himself a bump on his head. He has had a difficult time with conversation. He would forget what he was saying or get confused while talking. He just has not been himself. The OCD behaviors haven't caused major problems. The tics are upsetting to watch. But seeing Adam's sweet personality slip away has been really, really hard on me. I have been praying so hard about this.

Today, I saw improvement. He made jokes. He talked about things he remembers happening, like he usually does ("Remember that time we had a snack outside at Aunt Tammi's?"). He winked and gave me a thumbs up after doing more than was asked of him. No getting stuck while trying to complete a thought and no getting overly upset. He seemed much better than yesterday personality-wise. And the tics are much milder and less frequent.

This picture was taken yesterday. Notice his right hand. He was in the middle of doing some repetitive opening and closing. I didn't see as much of that today. He still did some of the movements, but it was noticeably milder that it has been.

I am always grateful to be able to spend my days with him, but have been especially thankful this week. I don't know what to expect tomorrow, but today made my heart happy.

In other news, on Monday, Levi decided he would get out of bed at nap time. I had just reorganized his room.

And since he didn't get a nap, this is what he did at 6pm that night.

He had an ENT follow-up today and we will be doing a sleep study soon. His tonsils are large, and the doctor wonders if his tongue-sucking habit is actually a way to clear his airway.

The teachers that are on Wes's team went in together and got Adam these Lincoln Logs. He was so excited. His daddy was pretty happy, too. It always means a lot to share a favorite childhood activity with your own child. This was a special moment for everybody.

Some of our favorite people in all the world are going to be here tomorrow. The Albers Family is traveling from Texas, and we are so excited!

I will keep you posted on Adam. Please pray for continued progress. Thank you so very much for your encouragement, kind words, and especially the prayers. God listens.

Refined by Fire

First, a few pictures to share...

This one was taken over Christmas Break. The snow kept melting and freezing as temperatures changed throughout the day. This is a piece that Adam found on one of our swings. "Look, Mom! It's a phone!"

Adam took the next picture himself. I didn't even crop it!

We got doughnuts for breakfast one morning this week. Adam made this edible arrangement.

Basketball and wrestling with Daddy is now a part of our evening routine. It seems to be everyone's favorite time of day, even mine, and all I do is sit and watch. The three of them laughing together makes my heart full of joy.

Ice cream sandwiches before our evening worship service tonight...

I am sure you wondering, so here goes...If anything, I am more concerned about Adam today. He is having a hard time completing his thoughts when speaking, and those of you that know how eloquent he is can understand why this is upsetting. I emailed the neurologist today, and he replied two minutes later telling me not to worry and that it may go away very quickly.

It is not easy seeing him like this, and the chance that this may not go away, no matter how slim, really frightens me. Statistics are not comforting to me. I'm the 1 in 800 that gives birth to a child with Down syndrome. I'm a parent of one of the rare cases of whatever Adam is dealing with. Chances and percentages give me no peace of mind.

During our Bible class this morning, we talked a little about trial by fire. 1 Peter 1:7-9 says,
     "...though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy." 

Gilt looks a lot like gold, but in a fire, it will curl and disappear. It cannot stand up to the fire. By testing it under fire, a person could tell if a gold piece was real or not. After the fire, only pure gold would be left. The process of purification can be repetitive, intense, and time-consuming. These verses tell us that even after all the work of getting a pure gold, it perishes...and gold is not anywhere near as important as our faith.

Over the last two and a half years of raising Levi, our ray of sunshine with an extra chromosome, God taught me that what I once viewed as a curse was actually a blessing. God sometimes gives me a need to depend on Him, just when I think I am doing well on my own and getting all the ducks of this life in a row. This world will pass away with all of its imperfections, and I thank Him for reminding me that life is temporary and that He matters most.

God is good, even when life isn't.

Hopeful

The immune system normally can distinguish between the body’s own cells and foreign cells, such as strep or other infections. When these foreign cells are recognized, the immune system attacks them. But sometimes the immune system makes a mistake and attacks the body’s own cells or tissues instead (U.S. Department of Health, 2007).

We do not know exactly what infection Adam had because there are not tests for those things (besides strep, and his initial tests didn’t show strep but we are waiting for more tests to come back which will show if he’s had it in the last several months). It looks like whatever infection he had targeted his brain. While that sounds terrible, the good news is that the neurologist said that when this happens, no brain cells are damaged. The communication in the brain gets mixed up, which causes the tics and obsessive-compulsive behaviors.

A friend sent an email from one of her friends in Texas that has been through something similar. We spoke on the phone today, and she gave me some things to check in to. While the neurologist said that antibiotics wouldn’t help, this parent said that was their answer…and it took them years to find that out. The wonderful pediatrician we’ve been working with gave me her cell phone number and we’ve communicated via text today. I am leaving now to pick up the antibiotic she called in for Adam. 

He has been calmer today, but has had lots of tics all day long. Yesterday he was extremely hyperactive and not himself at all. We are praying this will all be over soon, and our sweet boy will be back to himself.

I will keep you posted. Thank all of you for your love and concern, and thank  you, Kristi Dina for sending that email.

Resources:

U.S. Department of Health and Human Services. (2007).  Understanding the immune system: How it works. Brochure retrieved January 11, 2013 from http://www.niaid.nih.gov/topics/immunesystem/documents/theimmunesystem.pdf

Got Some Answers

The doctor was wonderful and knew exactly what is going on and explained things very well. I will explain more later when we get the information packet he is emailing us, but it is post-infectious, like we thought. In 75% of the cases the symptoms are gone in 6 months, 95% of the time it ends in one year, and there is a small chance it will cause long term problems.

Thank all of you for praying and for asking others to do the same. I feel that the Lord's hand was the reason we came to the right hospital on the right day and that this particular doctor was able to see Adam.

Again, details to follow. We are being discharged now.

Hanging in There

Adam was admitted last night. They are doing extensive blood work and urine analysis. These tests will show if he has any sort of infection or has been exposed to any chemicals. We are in a room on the neurology floor, and the doctor that is doing rounds this morning just happens to be the doctor that specializes in tics.

The blood work was very upsetting for him (although I'm the one that almost passed out when all that blood was drawn). So far his CBC (complete blood count) came back normal, which means it is unlikely he has an infection.

He was up later than he has ever been last night. We didn't get moved to a room until after ten and it was past midnight when we were done visiting with the new doctors and settled in for sleep. He was up at 6:30 this morning (normally sleeps til 8am). They expect the doctor to see him by 9am.

They left a pic line in so they don't have to stick him again if they need more blood. He is like me and cannot stand it. He says it makes his arm feel weak, which is the way I remember feeling when I've had to have them. After all the trauma from last night, he doesn't want any doctors or nurses touching him. When his vitals were taken at 4am, he swatted the woman's arm and said, "Hey! What ya doin'?" in an irritated voice before falling back to sleep.

I will update when we know something.

Greetings from Cincinnati Children's Hospital

At our appt. this afternoon, the pediatrician said she’s never seen anything like this and sent us on to Cincinnati Children’s Hospital, which is where we are right now. She spoke to a neurologist that suggested we come to the ER here.

At lunch today, these movements affected Adam’s ability to hold his utensils. Rather than using his thumb, he’d squeeze it in against the rest of his fingers. He’s been unusually thirsty, has new movements, and has been really hyperactive. When talking to me this morning, he’d spin in circles. When walking, sometimes he’d quickly turn his head side to side. He fell asleep in the car on the way here, but his leg movements kept waking him up. He’d kick his legs, lift and tighten them, and push against the back of the driver’s seat. When he woke up, he was antsy to use the restroom. He leaned to the side, then front, etc. making quick circles.  The only time I’ve noticed the intensity increasing is when he has to go to the bathroom.

His mood is good. He doesn’t seem too upset by any of this, but is getting more frustrated. When he woke up, I asked how he was feeling, and he said, “Still…” while holding up his hands that were repetitively opening and closing.

Thank you all so much for the encouraging words. It means a lot sitting here knowing that people are praying and thinking of this sweet little guy. We appreciate it so much.

Update and Details on Adam's Health

Monday night, out of the clear blue, Adam started having involuntary tic-like repetitive movements. We kept a close eye on it, and it continued all day Tuesday.

I have mixed feelings about putting a video of it here for all to see, but maybe someone can give us some direction, and I want my family to see what is happening.

There have been no changes or emotional reasons to trigger this sort of behavior. I do not think it is anxiety. He does this at 2 am when he is awake just long enough to go to the bathroom. He does it when he is running around outside. He does it when he is calmly listening to a story. The last part of the video shows him twitching his fingers the moment he fell asleep. It seems neurological to me.

Adam very recently became strangely obsessed with making sure his blanket is perfectly smooth, with no wrinkles in it, which seemed odd to us, and these strange movements all the sudden had us worried. Wes found some information online that concerned us. I am recovering from strep, and there is a condition in which strep attacks the brain instead of the throat. It causes a rapid onset of tics and obsessive-compulsive behavior. The condition is called PANDAS. You can click here to read about it.

I called the after-hours number at our pediatrician's office & a nurse called back. She didn't think we needed to scare him with a trip to the ER or risk exposing him to the viruses floating around there. She suggested we come into the office Wed.

Our Wed. appt. was at 11am. Adam's quick swab for strep came back negative, and his repetitive movements were still going strong. The doctor called a neurologist who said we needed to go to the ER and that he'd meet us there. They thought that it was caused by an infection targeting the brain. The pediatrician told us that we could expect blood work and possibly a spinal tap. We were so afraid. I was shaking as I sent out texts to let people know what was going on.

The tics subsided some once we were in the ER. Seven different doctors came to look at him throughout the day. The attending finally came and immediately said that he didn't see anything that made him think it was caused by an infection. He didn't want to do any invasive tests and told us it could be tics, obsessive-compulsive disorder, or stereotypic (repetitive) behavior. It might go away. It might not. We are to meet with him again in 2 months if it hasn't gone away. We can cancel the appt. if it does go away and we are to come in sooner if it worsens.

The pediatrician called us back as we were packing up to be discharged, but she didn't sound so sure of the neurologist's assessment. As I explained what happened, she kept saying, "Interesting." Then she told me we could come back to the office and she'd do the blood work and that she'd refer us to someone for a second opinion if we wanted. This just makes me think it isn't a good idea to sit around and wait two months to see what happens.

We are going in at 1 pm today to get blood work done. Levi is with Grams and Grandpa enjoying some special time with them. I will post an update here whenever I know more. Please pray that we can figure out what is going on with our sweetheart.