Blessings and Obstacles

Jonah turned 4 on December 9th!
He had a follow-up MRI last Tuesday at Duke University Hospital to check his spinal cysts and the patch they put on his dura. The results were amazing! Jonah had his brain surgery 8 weeks ago. In those 8 weeks his cysts are almost completely gone. The patch on his dura has attached perfectly without any leaks. His neurosurgeon is so pleased with his quick recovery and the amount of spinal fluid that is now getting to Jonah's brain. It was a rough drive home by myself with Jonah throwing up the whole way from the drugs, but we made it.

Because of his brain surgery, he is limited in the sports he can play. The surgery weakened his neck muscles and they also had to remove some bone. Therefore, he will not be able to ever play football, hockey, lacrosse, or boxing. A previous nurse told me he was not able to play soccer, but our neurosurgeon corrected that and said he could play soccer. Yea! Of course, this is so exciting to me! We will most likely enroll Jonah in Spring soccer. His neurologist thinks it would be a great outlet for his need for input. Jonah really has a passion for music and singing... I could see him really pursuing that instead of soccer, but a girl can dream!

Some of our latest developments include moving out of our tiny 2 bedroom apartment on January 14 and into a 4 bedroom house. Our neurologist suggested to us that we de-clutter Jonah's space, especially in his bedroom, so he can have a "zen" space to relax and come down from sensory overloads. We have done that, however, the rest of our tiny apartment is driving even ME crazy. I can't even organize, because there is no space to put anything. In the last few months, Jonah has been having a really hard time "coming down" from his sensory overloads. So, we have decided it was time to move into a house with enough space for him to hide and relax from the outside world. It also has a large backyard that he can roam and get his wiggles out.

A downer development is that our medicaid for the kids expires on the 20th of December, and will not be renewed because we exceed the income limit. On top of that, our primary insurance has a cap for the number of services the kids can get in a year, and we have exceeded that. Our "new year" does not begin until July 1, 2012. So, now I have to sign Peyton back up with the county for services they come out to the home to do for which we have to pay for on a sliding scale based on income. I don't like this as much, because they believe in using the items in the home for therapy. I just don't feel like she gets as much out of it as she does at the private facility with all the special equipment. It is what we can afford for now, though. As for Jonah, I have to go back to the Behavioral & Developmental Pediatric Specialist and get him reevaluated for Aspergers. The county does not accept diagnosis from doctors as the end all be all. They will take the diagnosis into consideration, however, if they feel he doesn't have Aspergers, I will have to fight them on it. I have already fought to give him a half an hour a week of OT, but that was pulling teeth. I had them evaluate him twice. They said he was too friendly and made eye contact, so he didn't have Aspergers. SERIOUSLY!? If you wave shiny new toys at a kid, they are going to pay attention to you and be super nice and friendly. They don't do sensory therapy through the county, so the only thing I can really try to petition for is more OT hours a week. I am also going to ask that he is accepted into their Bright Beginnings Program next year. It is a preschool program through the county/school district which gives extra attention & tailors the curriculum to children with special needs. Jimmy and I are not sure how we feel about having him in that program next year since he has done amazing this past year in his "typical" classroom. He has really been forced to come up to the other kids' level to interact. It has been great for him. We are still thinking on that one.

Finally, starting in the new year, our entire little family will be going Dairy Free, Gluten Free, Preservative Free, Dye Free, and Processed Food Free. I know this sounds like quite an undertaking. We did try it for a week with Jonah a couple of months ago. However, we needed to stop, because he needed his blood tested first for his levels of antibodies for gluten. We also wanted to run it by his Pediatrician, Neurologist, and Neurosurgeon. They all agreed it was well worth the trouble. They all have had patients with Aspergers and Chiari Brain Malformation that the change in diet worked wonders for them. We have also had several friends with children with various special needs swear by this diet. All the doctors feel it is worth a shot, especially since his brain surgery has brought out his "true" sensory, hyperactive, severe tantrum self.

Our goal for next year is "No Medical Procedures in 2012"! LOL We joke about this a lot to bring humor to our crazy life. It would be nice to have a drama free year, though. Our prayer is for a year full of regular family outings. Jimmy and I have worked really hard to make things "normal" for Jonah and Peyton. Frequently, one or the other is missing for some kind of medical procedure, test, doctor visit, etc. This is a disruption to a "regular" family flow we are aiming to achieve. I am just really hoping this year is full of boring and normal. I really could use a lot of mornings of: doing crafts with the kids, going to the park, play dates, baking, riding bikes, building forts, or sitting in a tent and reading all afternoon to them. I am so hopeful for that kind of normal with no disruption of "grab your coat; we are late for an appointment!".

In the end, we have been blessed with so many miracles this year! We're so thankful and looking forward to next year!

Jonah had his Christmas party at school. He worked very hard to decorate his gingerbread house!

Peyton is getting around a little more and realizing Jonah eats at the little white table. She refused to be left out, so, she got to sit at her own "table" made of the chair and ate Cheerios with her big brother!

Playing at the Park

Our little family walked to the park today for the first time since Jonah's surgery! It was a bright & sunny 65 degrees outside… absolutely perfect. Jonah was thrilled to ride the swings again as well as climb up & slide down the playground equipment.

As you can see from the video, Peyton had a great time as well!

Hallelujah

A reoccurring theme for my relationship with Peyton: Hallelujah.

When Peyton was born with Down syndrome it rocked a lot of our friends' and family's world. Some were upset and saddened at the news of her syndrome. I, on the other hand, only saw her as my sweet baby girl. Not one tear was shed for a "syndrome". In the quiet moments in the middle of the night, I rocked her. I set my alarm to wake her up so she would eat (she wouldn't otherwise). After she had her preemie sized bottle, I was always moved by the Spirit to rock her, cuddle her, and praise God for my sweet baby girl. Being told she was deaf, I figured she would at least feel the vibration from me singing. My usual for Jonah was "You Are My Sunshine". But for Peyton, all I could sing was "All Creatures #2" by David Crowder Band. Mostly I sang the same verse over and over again while I cried tears of joy for just being blessed with my sweet girl.

"Praise, praise the Father. Praise the Son.
And praise the Spirit 3 in 1.
Oh praise Him. Oh praise Him. Hallelujah. Hallelujah. Hallelujah."

I haven't sung this to her a while since she dives into her bed at night and goes to sleep. But today was a day I held her tight, and cried, and sang:

"Praise, praise the Father. Praise the Son.
And praise the Spirit 3 in 1.
Oh praise Him. Oh praise Him. Hallelujah. Hallelujah. Hallelujah."

Today at Chapel Hill University Hospital I was told Peyton has PERFECT hearing! The audiologist couldn't even explain it. She said most children with mild hearing loss can be misdiagnosed, and maybe her right ear was misdiagnosed. As for her left ear that was "marked" severe since birth, it has been now deemed perfect. All the nights Jimmy and I prayed with Jonah for Peyton to have restored, perfect hearing... WOW! A Miracle.

Today I pray for grace again and forgiveness. Sometimes, in my quiet prayers, I doubted. I doubted a miracle for Peyton's hearing.

Please join Jimmy, Jonah, and me in celebrating Peyton's miracle. We give thanks to the Lord.

Find the Light in Disappointment

We are almost at the 5 week point in Jonah's recovery from his brain surgery. I was trying my hardest not to get excited about the possible "extra" benefits that can occur from Jonah's surgery. We were told that children who have this surgery done will sometimes see a relief in their sensory issues. It is not a given that this occurs, but it has been seen in a lot of cases. However, at this point we should have already started to see a change. There has been none. This would have been such a blessing to our daily family life. We really pick and choose our family activities due to the sensory overload that can occur for Jonah. It makes it miserable for him and us if we don't consider it.

I feel awful right now that I am not rejoicing in the recovery he HAS had. We have been so blessed with an amazing medical team and an almost (needed steroids for meningitis) flawless recovery. His wound has healed quickly and he is not experiencing frontal lobe headaches that can be a side effect of this surgery. Praise Jesus!

My continued prayer for myself is "God please grant me grace". I will continue to find the light and hope in my selfish disappointment. I am forever grateful for healthy children. Please help Jonah to find the joy in everyday activities. That he will not be so overwhelmed with crowds, but to find peace and comfort in our arms.

An update on Peyton:
I took her to Chapel Hill University Hospital last week for a second opinion on her hearing. They are truly the best of the best. I have found that a lot of families have been misdiagnosed in Charlotte with hearing issues.

Chapel Hill has scheduled surgery for Peyton today at 7:30am. She will be having tubes put in for the third time to help keep her ears clear of fluid. While she is under they will be performing an ABR hearing test. It is the most accurate way to measure her hearing. She has always been diagnosed with the left ear being severe. When we moved to Charlotte we were told her right ear was also going, and that she needed hearing aids. This test will confirm if we should continue to aid her or to discontinue their use. She seems to hear fine without them. We are not sure if her hearing (especially the left one) has been healed by God's good grace or if it is just the right one that was misdiagnosed when we moved here? Either way, we are thankful for all things, and praying for a flawless surgery.

The Sky's the Limit

As a father of two children with special needs (Jonah with Aspergers & Peyton with Down syndrome), I thought it was time to share my thoughts on this story that I keep seeing pop up on my friends' Facebook Walls.

While I think this story is truly beautiful (I definitely shed a tear or two) for many reasons, I can't help but wonder why Jason wasn't playing with the team from day one.  I mean, the kid scored 20 points in about 4 minutes of gameplay!  That's gotta be a better performance than most (if not, all!) of the other kids.

My fear is that limits were placed on him (maybe by his parents, his coach, his teammates, etc.), because he has Autism.  Perhaps people with special needs are not given a chance to keep up with (or even exceed) their peers due to assumptions (either consciously or subconsciously) others make & limits they place on those like Jason.

My hope is that Shannon & I never, ever limit what our kids can do based on their disabilities.  We will always communicate to our children that the sky's the limit and give them every opportunity to reach for the stars.

Healing

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Today was our two week follow up from Jonah's brain surgery. Dr. Grant, his surgeon, was pleased with his progress! There was no redness or bubbles on his wound (that would show he sprung a leak). Thankfully we got the all clear for preschool.

Again, he could not express enough how important it is for Jonah not to be jumping. We keep close supervision on him at all times to prevent it, and I have gotten the same promise from his teacher, Ms. Courtney. So, we feel comfortable with him going back to school on Tuesday. YIKES!

Next steps are to make sure that he does not jump or do any physical activity for four more weeks. In 6 weeks we'll head back to Duke for another MRI to see how he is healing. They will specifically be checking the syrinx on his spine to see if it has started to go down in size.

Please pray for complete and perfect healing and that his sleeping starts to improve. Specifically, that he can sleep through the night and be rested in the morning. Also, for his patience and understanding in not jumping (he thinks we are just being mean), for him to be calm and relaxed and that he will find contentment in doing quiet, calm activities.

Thanks for all the love, support, and meals!!!! They have been amazing. It is such a blessing to not have to worry about that at the end of the evening when the kids are unraveling. We feel so blessed!

Recovery

This last week has been a whirlwind. After a rough first couple of days at home, things started to improve. I was able to get Jonah on a regular dose of steroids after an all day back and forth with the hospital (Jonah's doctor was off). Once he got the first dose, his pain was almost gone. It helped so much with the pain in his head and the muscles in his neck. Poor buddy. His neck muscles were so tight that his shoulders were up around his ears. After some steroids and a round of physical therapy, he had a neck again!! His shoulders went back to their regular position, and he finally smiled for the first time in a week.

We're tapering off his steroids (according to his prescription) this week, and he hasn't had any pain medication in at least 3 days! Wow! God is good! We are so pleased with his recovery. I am taking Jonah back to Duke this Friday for a follow-up appointment. They will look at his incision and evaluate his progress.

Our main concerns right now are that Jonah doesn't bump or try to scratch his incision and that he can continue to remain calm and not jump or run. He constantly jumps in place as a sensory coping mechanism. He wasn't able to do it due to the pain, but now that he is feeling better, he is starting to try. His neurosurgeon wants him to not climb, run, jump, bounce, etc. for the next 6 weeks. Ugh! That is really hard to tell a 4 yr. old not to act his age. Also, I am praying that his incision heals completely by this weekend so that we don't have to keep changing the dressing and pulling tape off his hair.

We want to thank everyone for all the continued love, support, and prayers. Jimmy and I are overwhelmed with the amount of thoughtfulness, kindness, and generosity of everyone. We are also SO grateful for my mom who has been staying with us and helping me care for the kids. Jonah needs so much one on one attention right now. It is nice to have someone there to give Jimmy and me a break. She helps so much with the kids. And when she leaves on November 2nd, my baby sister will be coming to help for a week. They definitely help keep me sane.

This picture was taken in the hallway of our building. This was the first time Jonah got to leave the house after his surgery. He was waiting for Jimmy to change out of his work clothes, and he refused to come inside and wait. I think he was afraid he might not get to go with his dad. So, he decided he would secure his odds by waiting out in the hall.

First Day

Last night we got home after an eventful evening. Jonah's pain medication started to wear off in a construction zone, and we still had to fill the script. So, it was interesting.

He played for a bit, and I got him to eat a little. He finally fell asleep at 10pm. I slept on his floor last night, fearing that he will attempt to get out of bed on his own. He woke up at 2am crying (I think he didn't know where he was). Then he woke up at 4am in pain because his meds wore off, and he needed more. So, after giving him more meds, I let him lay in bed and play with a little pirate bank we got him. He passed out around 5am and slept until 7:20. Whew! I am exhausted.

For the rest of the day I have chased him around the house like he is a new toddler learning to walk. Telling him to sit down, rest, "let's lay here and play cars", etc. It is pretty tiring. He knows he is limited but is trying to do his regular stuff. He can't bend down and pick anything up. He has a hard time sitting down on the floor from standing, and he can not turn his head at all from side to side.

Today I have the worst migraine. I am trying to be a mom filled with sunshine and positivity...which for me we know is already painful enough (Ha!). It just takes a lot out of me. And I am trying to reconnect with Peyton because she hasn't seen us in a week. I am wishing this week was over yesterday.

BUT... instead of complaining, I give thanks. Thanks for healthy children and family. Thanks for an amazing
medical staff. Thanks for a home and groceries in the fridge. Thanks for family and friends who have helped support us emotionally and financially through this trying time. I give thanks and praise to God.

These are pics of the kids before the surgery doing Halloween things. Enjoy!

Heading Home is Stressful

The doctor finally released Jonah tonight. He felt he was ready. We are driving home as I write this.

I am super stressed out about it. Jimmy is going back to work tomorrow. My mom is staying with us, but I am just so nervous about bringing him home. It is worse then a brand new baby. This one isn't allowed to be or do anything that is "him". Running, jumping (sensory thing he does to cope), wrestle, climbing, etc. Basically, they want him to sit on the floor and quietly play or he risks popping his stitches and having to go back in for surgery. He could also do damage to an already healing brain. The worst part about it is that we can't leave him alone for a second. He can't walk independently or stand for that matter. We must hover at all times. If he were younger I could just put him in a pack and play. But alas, my big boy will have none of that.

Please pray for strength. This is a big mountain to climb. We have a follow up appointment on the 28th.

On a lighter note, we were able to run over to Duke University this afternoon while Jimmy's parents sat with Jonah. I took a few pictures of the chapel. Also, on our drive home there was an amazing sunset.

Pray, Pray, Pray

Jimmy and I believe in the power of prayer and the healing from the Holy Spirit. We feel like all your prayers for Jonah have been answered, and we praise Jesus. We really need you to continue with a new prayer for our Jonah-Bear.

After an okay day yesterday that progressed into a rough night, we are putting Jonah on steroids. Dr. Grant (his neurosurgeon) thinks that Jonah is battling Meningitis. He is very stiff and his severe pain last night was a red flag. We are going to hook back up his IV and administer the steroid through there for the first dose. For the next dose we will see if he can take it orally, and if that goes well, we can possibly go home tonight. Our main concern is that we stay as long as he needs the extra help.

Secondly, Jonah still walks like a new baby deer, crashing into things if left unassisted for even a second. Dr. Grant wants him to start PT ASAP by the end of this week at home. He feels that since Jonah's cerebellum was so tilted due to inflammation of his lobes, that it caused Jonah to overcompensate. Now, that is no longer tilted and the pressure on his spine has been relieved; he essentially has to relearn how to walk. When left standing, he starts drifting to the right.

We are so thankful for all the amazing doctors and nurses. They have fussed over Jonah and made us feel so special.

Our current prayer is for pain relief for Jonah, that his Meningitis heals quickly, and that he adjusts to walking with a straight brain.

Lastly, Jonah continues to make us laugh in a stressful time. After all the poking and prodding by doctors, nurses, and student nurses, Jonah asked Jimmy, "Daddy, can you close the door?" He made us smile. As if closing the door will prevent them all from coming in anymore. LOL

Long, Busy Day

Today was a very busy and, at times, a very long day. After tossing & turning for about an hour tonight, Jonah finally fell asleep after receiving an unscheduled shot of morphine (through an IV)... he was having a heck of a time getting comfortable on his routine Tylenol dosage alone. Please pray that that'll be the last shot of morphine he'll need in order to get comfortable to fall asleep.

With the exception of tonight, Jonah had a relatively good day. He is now free from all his IVs and had his bandages replaced this afternoon. Both were uncomfortable experiences but both were big steps in getting us closer to going home. Speaking of going home, Dr. Grant is quite certain that Jonah will be ready to go home tomorrow! Before giving his final approval, though, he would like to see Jonah a bit more steady on his feet. Please pray that Jonah will have the strength, energy, and courage to walk around his room and down the halls tomorrow, showing Dr. Grant (and himself) that he's ready to bounce (not literally, of course) from the premises.

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Since Jonah was feeling better and is no longer tied to any IVs, we took him on a wagon ride down the hall and down the elevator to the hospital lobby. It took some courage for him to trust that he'd be okay in the wagon (he wanted me to carry him)... we weren't backing down, though, because he needs to start believing he can do things that he could do just fine before the surgery. When we got to the lobby, we sat next to one of the fountains where we threw "monies" in... one of Jonah's favorite past times.

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The other major part of our very busy day consisted of Peyton coming to visit for the afternoon from Charlotte with Grandma & Grandpa (Shannon's folks). Since Nana & Papa (my folks) are still in town, they were obviously very excited to see Peyton and spend some quality time with her today. As you can see from the picture, Peyton was just as excited to spend the afternoon with her Nana & Papa as well.

Like I said, it was a very busy day, and things started to feel long tonight when Jonah couldn't fall asleep. Fortunately, he eventually drifted off, leaving Shannon & me at least a few hours of quiet time before bed.

We'll be sure to post if/when Jonah is released tomorrow. Pray that we all get the rest we need tonight in order to face what's ahead of us tomorrow. Your gifts of love and support have been truly amazing. We're so thankful!

A Day of Progress

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We started off with a rough morning. I relieved Jimmy of his fairly smooth evening with Jonah. Neither slept a whole lot, but besides a traumatic "get him to pee" event, they did pretty good.

Jimmy headed back to the hotel around 8am to get breakfast, a shower, and a nap. When I got to the hospital they started the changing of the nurses and all the residence and doctor walk throughs. This brought on the change of pain medication for Jonah. They decided to get him off morphine (through his IV) and switch to an oral pain medication that lasts longer but isn't as strong. So, I got him to take that. His orders for today were to drink, eat, pee, and hopefully be moved. I was quite pleased with myself that I got him to take a few sips from his "Cars" juice box. I then had the nurse help me get him out of bed and stand at a potty and pee. This was VERY upsetting for Jonah because his head feels like it is going to fall off his shoulders when it is free of laying on a pillow. He holds his hands to his ears to support it and cries. So sad. :( He peed, and we sat him back in bed where he proceeded to vomit everywhere. His first time ever. He has never had the stomach flu. Anyway, I guess the new medicine tends to do that on an empty
stomach.

Soooo, they changed his sheets, cleaned him up, and took out one of four lines he had in him. Well, that sprayed blood all over me and the sheets. Soooo, we got him up and changed his sheets again. FINALLY, I changed him out of his uncomfortable gown and into his own jammies. I gave him a sponge bath, brushed his teeth, forced saltines and juice in him and he was a brand new boy.

Whew! The great part about all that was that it helped him build a little more confidence in his neck skills. He is still really sore, but it worked him out a little, therefore, he is more willing to sit up without holding his hands to his head! His face is more swollen today. They said that is normal because of all the trauma. It is healing.

Jimmy's parents were here and "Nana" got Jonah to eat a toasted, buttered bagel. Good job, Nana! So, he is coming along. When Jimmy came back at noon, he finally got Jonah to sleep for a nap.

We appreciate your continued prayers. Our prayer right now is for total and complete healing without complication. We also are praying for Jonah to feel more comfortable with his neck muscles and to start moving his head. Right now he acts like it is in a collar.

We feel so loved by all the prayers and support. We would not be able to get through all this without you. Thank you!

Surgery and After

Jonah's surgery went very well today. His neurosurgeon said that his cerebellum tonsils were squeezed so tight, they had turned white. The right tonsil was so swollen that they couldn't even see the left one. This major swelling caused his cerebellum to sit sideways in the spinal canal and pushed his spinal cord against one side of the canal. After clearing out the bone and making more room, the right tonsil popped up from the wedged angle it was sitting at which finally gave them the view of the left tonsil that was much smaller. WOW!

After separating his neck muscles to reach his brain, he can not turn his head and cries when he has to hold it up without assistance. He is very sore. He can only lay on his sides, because his head is so sore. Thanks to morphine, he is resting comfortably tonight, but he had a pretty rough afternoon. Tomorrow is going to be even more tough. They want him to start moving his head. Also, he has his hands wrapped in diapers, because he is trying to pull out his IV and scratch his wound. This is very upsetting to him.

Here is a picture of his incision on the back of his head. They have a piece of gauze covering the incision with a clear medical tape over it.

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Our prayer is for a quick recovery with no complications. We also pray that Jonah can rest comfortably these next few days and that Jimmy and I are able to rest as well.

Thank you all so much for the support and prayers. The outpouring of love has been SO amazing and greatly appreciated! We'll post again tomorrow.

This Is The Day

In the words of my beautiful wife...

"This is the day the Lord has made! Praise Jesus! Jonah came out of surgery, and it could not have gone any better (said Dr. Grant)."

We'll have a more detailed post later about the specifics from the surgery (what they found, what they did, etc.), so stay tuned.

In the mean time, keep the thoughts & prayers comin'! Jonah is very uncomfortable (when he's awake) and most likely in quite a bit of pain. But, as you can see, still as good looking as ever!

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Surgery Update

Jonah's surgery didn't officially start until 11am. We just got word things are going smoothly and he is doing well.

This is a picture of Jonah and Jimmy just before surgery. Jimmy had to suit up to take Jonah back to the OR. He did really great.

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"This Bed Is HUGE!"

It's been a long day.  After loading the car and driving from Charlotte this morning, we arrived in Durham and got to the hospital at 1 for Jonah's pre-op appointment.  By the time we got done (with the tour, meeting with the anesthesiologist, meeting with the nurses, getting 6 vials of Jonah's blood drawn, and meeting with the doctor) it was after 4.  Overall, Jonah was a trooper (thanks to our iPhones!)... only about 3 meltdowns.  We went straight to the hotel to get checked in and then met my folks (who arrived in Durham this afternoon) for dinner.  It was great to see them.  Jonah was so excited to hang out with his Nana & Papa for a little while.

Things are quiet now... Jonah's been asleep for about 2 hours, and Shannon & I are trying to relax before our even bigger day tomorrow.  We have to be back at the hospital at 7:30 in the morning, and Jonah's surgery is scheduled to begin at 9:30.  Thanks for all your prayers and words of encouragement, everyone... every single one means so much and is helping us get through this!  We'll post again tomorrow.

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Before bedtime we let Jonah watch one of his favorite shows in our room's king size bed... when I first threw him on it, he looked at me and said, "Dad, this bed is HUGE!"

Visitors... With a Catch

Jonah knows his Nana & Papa (my folks), Grandma & Grandpa (Shannon’s folks), and Aunt Mary-Anne (Shannon’s sister) are coming to visit very soon.  In fact, every single day he confirms they’re still coming, and every single night we pray for their safe arrival.  What I’ve been trying to explain to him, though, is that, instead of playing outside or going to the mall or jumping at Monkey Joe’s with them, we’re going to be playing new games inside, reading new books, and watching new shows (DVDs).

Last night, while giving Jonah a bath, I tried explaining to him (again) that we’re going to the hospital in a couple days so the doctor can fix his brain.  Afterward, he’s going to have to lie down and rest at the hospital and then at home for “lots & lots of days”.  I told him that it would be okay, though, because we’ll have some of our favorite people visiting along with new toys to play with, new books to read, and new shows to watch.  He looked at me and smiled, and I said, “Okay, buddy?”  “Okay, Daddy.”  He had the same response the last time he and I had this talk.

Jonah doesn’t understand that he’s going to be laid up for the next several weeks.  What he does understand is that some of his favorite people in the whole wide world are coming to visit.  It’s hard to see him so excited knowing that he doesn’t understand what’s bringing them to him.  What’s harder to think about is all the fun stuff he’ll want to do with his visitors while they’re here and the fact that he probably won’t be able to do 99% of it.  Can you imagine telling an almost 4 year old boy that he can’t run & jump for weeks on end!?

Of course, there’s always the distinct possibility that this is all harder for me to think about in theory than it ever will be for Jonah in actuality.  Maybe he'll love the down time, the new games & books, and the personal attention he'll be getting.  I mean, who wouldn't, right?  I just hope he doesn't get too comfortable and we see a digression in milestones in areas like eating, communication, and potty training.

As Friday approaches, your continued prayers for peace (now & post surgery) for all of us are appreciated.  Of course, we’ll continue to share more leading up to and after Friday… your encouraging words mean so much!

And the Winner is... DUKE!

Just wanted to update everyone on the day: Jonah and Peyton both did amazing on the car ride. Jonah talked non-stop both ways. At least it kept me awake! Jonah had a hard time transitioning into and out of the hospital. Thankfully Peyton was in a stroller, so I just pushed with one hand, and carried Jonah with the other arm.

Dr. Grant was AMAZING! He answered all my questions before I even asked them. He sat for over an hour going over the procedure and explaining why they would do certain things. He put my mind at ease about possible complications. He was very thorough.

So, Jimmy and I have decided to take Jonah to Duke University Children's Hospital for his surgery on Friday, October 14th. We are praying for a quick recovery and no complications. He should be fully healed after 6 weeks. Thanks for all the love and support you have given us. I will continue to keep you posted.

One Day at a Time

(Jonah has figured out how to use the camera on my phone)

As I sit here at the computer paying bills at 1am, I can hear Jonah in his room jumping on his bed and talking to himself. He is reciting story books we have read to him, as he jumps. A part of me smiles at how smart he is, and how cute he sounds. His little voice keeping himself company in the dark. The other part of me wants to cry for him. Jonah is no longer taking naps in the afternoon. I have tried, but he just ends up reading in his room for two hours. Most of you would say this is normal. But after four hours of preschool and two hours of therapy, you would think he would be tired. So he crashes at 6:30pm. So now after only 6 hours of sleep, he is up again jumping on his bed. He use to have a hard time falling asleep, but when he finally did, he would be out until 5am. And even on those days he would have taken a 3 hour nap.

Why does my heart break? My baby is exhausted on a daily basis because he can not stay asleep. This is one of the symptoms of his brain malformation we have learned. We have started using over the counter Melatonin to help him fall asleep, but it doesn't do much to keep him asleep. We are not really interested in medicating him anymore then that. We want to see what the surgery does for his sleeping.

We have done a lot of research this last week about his surgery and have decided to go for a second opinion. I am taking Jonah to Duke University on Monday. I wasn't able to find a sitter, and Jimmy can't take off work, so I am going it alone with the babes. An almost 3 hour drive with the two of them, God give me strength. I am not worried about Peyton, it is Jonah I am worried about not having extra hands for. He gets so overwhelmed at new places, I usually have to carry his long, gangly body. So throw in pushing Peyton in a stroller, and an unfamiliar medical campus. Ugh! I know I can handle it,...I just don't want to have to do it alone. And on top of that, hear their opinion of how they want to cut open my baby.

Our hope for this appointment is that they want to go a less invasive route and just shave off some bone to make more room for his brain. Research has shown that opening up the dura (the sac that holds/covers the brain and spinal cord) puts children at a 4x higher risk for infection and complications. Research also shows that removing bone and opening the dura have the same result, if you just removed the bone. So why put Jonah as risk. I have been told, "its the doctors preference". So if we don't like what Duke has to say, we are heading to Columbia University in New York. They are one of the leading research teams in Chiari surgery in children. We are trying Duke out first because they are closer. We have heard nothing but great things about their program as well. So here's to hoping.

God, Grant Jonah Grace

Today we received the results of Jonah's MRI regarding his brain malformation called Chiari:

"Chiari malformation, or often simply Chiari malformation, is a malformation of the brain. It consists of a downward displacement of the cerebellar tonsils through the foramen magnum (the opening at the base of the skull), sometimes causing non-communicating [1] hydrocephalus as a result of obstruction of cerebrospinal fluid (CSF) outflow. [2] The cerebrospinal fluid outflow is caused by phase difference in outflow and influx of blood in the vasculature of the brain. It can cause headaches, fatigue, muscle weakness in the head and face, difficulty swallowing, dizziness, nausea, impaired coordination, and, in severe cases, paralysis. [3]" -Wikipedia

The doctor explained that with Chiari the average amount that the brain is down into the opening at the base of the skull is 6-8mm. Jonah's is 16mm down into the hole (the circle on top). Because of this, his brain is leaving very little room to allow for spinal fluid to flow freely to/from his brain. This is causing pressure to back up and form a spinal fluid cyst on his spinal cord (the circle on the bottom). If it continues to grow, it can cause damage to his nerves and possible paralysis.

So, where do we go from here? Jonah is having brain surgery on Monday, October 3, 2011. They will go in through the back of his head and neck and shave off some bone at the base of his skull to allow more room for the brain. It will also make a larger opening to allow spinal fluid to pass freely to/from his brain. They will also be cutting a bit of tissue out that encases his spinal cord at the top to allow more room to flow. It is very tight and not allowing the spinal cord to pulsate as it should.

He will spend a night in intensive care and a week in the hospital recovering. It will take 6-8 weeks for a full recovery. In that time, he is not allowed to play on playground equipment where he may fall. He is also not allowed to jump on trampolines or in bounce houses... some of Jonah's favorite things. He will be able to go back to preschool after a couple of weeks, though.

We praise God for enabling the doctors to find this in Jonah sooner rather then later. Left untreated, this could do a lot of damage. We are thankful every day for our amazing children and the time we get to spend with them. Join us in praying for Jonah's surgery... that God guides the doctors hands and that Jonah's body fights off any infection that he may be exposed to during surgery and recovery. We also pray that he has a quick recovery with no complications.

By the way, Jonah's first day of preschool went off without a hitch! Not one tear... from Jonah anyway... and he's excited to go back tomorrow. Praise God!

A New Day, A New Diagnosis

Jimmy and I took Jonah to see the Behavioral & Developmental Pediatric Specialist. She asked a lot of questions, observed Jonah, asked more questions, and did an Autism test to see exactly where he was measuring up in his behavior and little quarks. After scoring the test and observing him, Jonah tested as "mild to moderate autistic". With his scores and his "high functioning" behavior, they have determined that Jonah has Pervasive Developmental Disorder—Not Otherwise Specified (PDD-NOS).

"Because PDD-NOS is a spectrum disorder, not every child shows the same signs. The two main characteristics of the disorder are difficulties with social interaction skills and communication. Signs are often visible in babies but a diagnosis is usually not made until around age 4. Even though PDD-NOS is considered milder than typical autism, this is not always true. While some characteristics may be milder, others may be more severe." --Wikipedia

Needless to say, we are a bit relieved to finally have an "official" diagnosis. We knew he was on the spectrum but not exactly where. Having this diagnosis now allows us to access other free services in N.C. such as play therapy. I will be looking into that next week. We are pleased with the progress that he is making in OT, PT, and Speech Therapy. He is becoming a little more social and a little more adventurous with playground equipment. Our next hurdle is going to be preschool in the fall.

Jonah is enrolled in the YMCA preschool program down the road. It is a small class size and a small room. I did this on purpose before he was even diagnosed with SID, because I know he can get a bit overwhelmed in large rooms with tons of people. We are praying for him to be able to transition well and start to enjoy having little friends. I currently drop him off at the YMCA for an hour or two a week so I can workout. He is familiar with the building and knows that we go there to "play with friends". I am trying to teach him when he walks into the room to say, "Hi. My name is Jonah. Can I play with you?" It's a work in progress.

The next steps are meeting with the Neurosurgeon on Thursday and getting an MRI scheduled for his lower spine to see if it is tethered and to also evaluate his brain MRI to see how severe his Chiari is. Jimmy and I are pretty confident they will take a "wait and see" approach with him, because other then motor delay, he has not had any "major" side effects from it.

All in all, we are maintaining an upbeat approach to it all and just trying to enjoy everyday with our babes.

As it stands here are our current diagnosis for all our children:

Jonah
-Sensory Integration Disorder (SID)
-Pervasive Developmental Disorder (PDD-NOS)
-Chiari-type 1

Peyton
-Down syndrome
-Deaf

To Jimmy and me, our diagnosis of them:

Jonah
-Extremely bright
-Passionate
-Musically inclined
-Persistent
-Shy
-Extremely affectionate

Peyton
-Beautiful
-Stubborn (gets it from her mama)
-Friendly
-Loves to cuddle
-Observant
-Loves her brother unconditionally
-Compassionate

At the end of the day, we count our blessings for our wonderful children. Thank you, God!

Health Update On Jonah

We took Jonah to a Neurologist a couple of weeks ago. It was recommended to us by his PT, OT, and Speech Therapist. They diagnosed him with Sensory Integration Disorder which makes total sense to us now. He is upset by loud noises, bright lights, and the texture of certain things. While we were there they also drew a lot of blood for several tests for him. They checked his chromosomes, thyroid, amino acid levels, vitamin levels, etc. You name it, they did it. The point in doing this is that they are trying to figure out what is causing his motor delay, speech delay, and why he walks on his toes & jumps in place all the time. We are working are way to being diagnosed with Aspergers. But with Jonah having such mild symptoms of all these things, they wanted to make sure nothing else could be causing them. They had us go in for an EEG and MRI of his brain last week. The EEG was to see if he was having seizures, and the MRI was to see if his brain had any malformations that would be causing the symptoms. So, that brings us to today.

I got a call yesterday from Jonah's Neurologist regarding his blood work and MRI results; two things came back that are totally unrelated:

1) His chromosome test came back that he has a deformation of chromosome #7 and #10. They are not sure what causes this, but it has been found that children who have autism also have a deformation of these two chromosomes. But it is too soon to diagnosis him officially until we get a little further along into more tests and doctors. Something else they found, though, which is totally unrelated to the chromosome abnormalities is the scan of his brain.

2) They diagnosed Jonah with Chiari Malformation-Type 1. Basically, the base of his skull is to small for his brain and forces his brain down through the hole at the base of the skull, therefore, putting pressure onto his spinal cord and brain. This can cause headaches, fatigue, muscle weakness, difficulty swallowing, dizziness, nausea, impaired coordination (balance), and, in severe cases, paralysis. This explains a lot of issues Jonah has been having with his motor planning. He has a hard time stepping up a curb and playing on outdoor equipment. He has a hard time recognizing the left side of his body in some tasks such as chewing and using the left hand to help the right in some tasks. He has VERY low tone in his face. So after chewing his food a couple of times, he becomes fatigued and either sticks the food to the roof of his mouth or has to spit it out. This also affects his speech. He only moves his lips and barely opens his mouth wide to make different sounds. He falls all the time, just even walking down a flat hallway.

So, what does this mean/what can they do? Our next step is waiting for an appointment with the Neurosurgeon. They will do an MRI of his lower spine to see if the spinal cord has tethered itself to the spine or tailbone, therefore, pulling down on the spinal cord and brain. If that is the case they will go in and snip a little piece of tissue to release it, and hopefully that will alleviate some of the symptoms. If that is not the case, then they will evaluate how bad his brain is being pushed down. If they feel it is pretty bad, then he will go in for major brain surgery and make the opening at the base of his skull a little larger giving his brain more room and relieving some of the pressure that is being put on it. Jonah's brain is 1 1/2cm. lower then it should be, so they categorize his condition as "significant". A 1/2 cm is considered mild. Now we wait for an appointment with the Neurosurgeon.

We are asking for prayer for Jonah for total and complete healing before he sees the next doctor. God is big (Alpha and Omega), and has his hand in everything. Please join us in praying for a miracle.

Good, But Not Good Enough

Jonah was approved for Speech Therapy and Occupational Therapy through the school district. Hooray! However, again here I am blogging at midnight. This is a good thing, but that nagging Mom feeling tells me, "It's not good enough." He started his occupational therapy last week. He gets a half hour once a week. His speech therapy will start next week (also a half hour a week). I am uncomfortable with how the speech therapist wants to do it. She wants me to pull up to the school, and she will come out and get him out of the car. Uh,...not going to work. Calling her tomorrow to discuss it. Anyway, as I had said before, they evaluated him for Aspergers and said he does not have it ("he's too social" they said). But today after his OT session, walking out with his therapist, my heart was heavy. Today was rough. He was not cooperative. He didn't want to be touched or even make eye contact. As I talked to his therapist, Jonah happily hopped down the hall on his tippy-toes and jabbered to himself, pushing every button and knob on the way.

Jonah has good days and bad days. Typical of any kid, yes, I know. Blah blah blah! I hear it all the time. But THIS IS different. I feel like he checks out. Sometimes he will be very attentive, touchy, talkative, eye contact and all. Other days he is lost in his own world of jabber and jumping and singing and crying at the slightest transition of our day (well, he always cries during a transition). Today was that day.

So, I'm milling over my day with him and worrying about what is best for him and Peyton. Peyton regarding care... if she would grow more by being around other kids a couple of days but how would we afford that but I want to stay home with them, again Blah Blah Blah! (ramblings in my head) ANYWAYS, a few months back Peyton's PT told me about this center that deals with ALL issues Jonah related. i.e. Autism related issues, Occupational Therapy, Physical Therapy, Speech Therapy, Sensory Therapy, Transition Therapy, etc. However, it is private and I would have to pay a crap load to even just get him evaluated. Our insurance didn't cover it. So, I had to just put it out of my head. BUT! After applying for Jonah and Peyton to get Medicaid through N.C. they were BOTH approved! Peyton for obvious reasons but Jonah because he has a speech delay. SO, I can now try AGAIN to get Jonah evaluated at this amazing center using our Medicaid. I am calling tomorrow to see how much of it is covered. If it works out, I can send Peyton there as well. That way she will get double duty of PT, OT, and eventually speech therapy. I know it will be a lot for me and the kids. Lots of therapy and lots of driving, but I feel like this is a key time for both of them. They both developmentally need this. Jonah so he can at least go into preschool at some level closer to his peers (even though he will be older then them by 6 mths). Also, I don't want his teachers to come to me when he is in 3rd/4th grade and say he is having a hard time, and that I should get him evaluated. WELL, DUH! I don't want to miss this window. I want them both to have the opportunities to help them grow into better little people.

I am starting to understand more and more what it is to be a mom, a protector, an advocate. I will fight for my babies until the end. They deserve the best, and I won't rest until they get it!

It has been hard finding someone around here who actually can cut Jonah's hair without making it look worse. I resorted to buying my own clippers and doing it myself. I think I did a pretty good job.


















We have had a few pretty warm days in the 70s. We decided to make it a skirt day!

February

So, February has gone by in a flash. My mom came and visited for two weeks. Which was AMAZING! We were all sad she had to leave, especially Jonah. He realized she would just sit and hold him all day. He LOVES that.

Jonah also had his second evaluation for OT and Speech Therapy through the county. It looks pretty good. They believe his scores will reflect him getting care. We will not know until March 2nd. I will be having a final meeting with them then to review a plan for him. He is also potty training. He does awesome at home with just underwear on, but if you put pants on him, he forgets he is suppose to come and tell me he has to go. It's a work in progress.

Peyton is doing awesome! Her PT, Ashley, is really pleased with her progress. She is really sitting up strong and beginning to reach for things while sitting up. She still doesn't mind the hearing aids, unless she is really tired. She will pull them out when she is rubbing her eyes. Her left hearing aid was a bad fit, and we are waiting for the re-mold to get made. She is going to have a hearing test on March 3rd with the hearing aids in to see how much they are really helping her.

We (Jonah, Peyton, and I) have started going to the YMCA three times a week. I get to workout for an hour while the kids get the best care ever! Jonah loves his room there. It is a really nice Y that employs teachers full-time, so he gets the same teachers every time. They do a circle time and they play outside. He is learning that you line up to go back inside, you ask the teacher to go to the potty (still working on that), and that he knows Mom ALWAYS comes back after exercising. So he no longer cries when I leave him! We also go to church every Sunday and put him in care there as well. He has now also started to just walk right in there as well. My little dude is growing up!

Here are some pictures of my mom with the kids when she was in town:














I really did not pose them this way. Jonah wanted to hold Peyton's hand!































Peyton showing her outfit Grandma and Aunt "May-nin" bought her:


















Jonah displaying his new "Super Why" "every-wear" (underwear):


















A picture of the city in the background after I worked out at the YMCA one morning. It is so sunny and beautiful. It got up to 75 degrees that day. I LOVE this city!

Evaluation and Little Lungs

So Wednesday was amazing, Thursday totally sucked!
I took Jonah for his evaluation at the school district. Even though they received his hearing test from his previous doctor stating he had perfect hearing, they wanted to do their own hearing screening. So that took a half an hour. Which after we went into another room with the PT, OT, Speech Therapist, and Preschool Director. They had me fill out paperwork and asked a bunch of questions while the OT evaluated Jonah(while he sat on my lap). The PT looked at Jonah walk in the room and jump around and said he didn't need PT and excused herself to go onto another evaluation. Two minutes later the OT also announced she needed to reschedule the rest of her evaluation of Jonah because she also needed to hurry onto another evaluation. (SERIOUSLY!) Then after more questions, the others announced we would schedule another time for the rest of the evaluation because it was getting close to lunch and Jonah would probably not continue. I pushed for them to work with him a little more and they asked him questions and had him building blocks. (He was also "talking" during this time) Before we left I asked the speech specialist what she thought. Would Jonah be approved? She said he needed more evaluating, his score was a little low, but she wouldn't really know until later!!!!!
More then annoyed. Also they addressed my question of Aspergers and they said NO WAY does he have it. He is very social. They think he just has severe anxiety and sensory issues. Which they do not provide therapy for either. I would need to send him to private care for that. They scheduled his next evaluation for the middle of February and the final meeting to tell me what he would be approved for the first week in March! REALLY, March!? Ok so that is 5 months that he could have already been receiving ALL his care in Michigan. Ugh!

NEXT, Jonah got one of his very first immunizations on Monday. He then got a horrible cold on Tuesday, started a cough on Wednesday, and after his evaluation on Thursday went in to see the doctor. Four hours later Thursday afternoon Jonah was diagnosed with pneumonia, again. His pediatrician is AMAZING (same as Peyton's). She specializes in Down syndrome and Asthma. She could not believe Jonah has never had a chest x-ray or been referred to a Pulmonologist with his history of asthma/bronchitis/pneumonia. So she referred me to a great doctor who also is an allergist. They will test Jonah again for egg allergies, and if he still has them, he will be excused from having to ever have the MMR vaccine (YEA!). He will also do a further exam of Jonah's lung capacity and breathing issues. He was also FINALLY given a nebulizer to keep at home (instead of always renting one), and was put on an oral steroid. Which the doctor was shocked he has never had as well. They also put him on an amoxicillin and breathing treatments until his wheezing clears up. Poor buddy.

And because of all this, I had to postpone my college roommate and her husband coming to stay with us this weekend. MAJOR bummer! (sigh)
I guess the lemonade from all this is that Peyton and Jonah are finally receiving the health care services they needed. Peyton can hear and Jonah's lungs have special care now.

A picture of Jonah's new nebulizer and dinosaur mask he wears.

Special Ears

I took Peyton to get her hearing aids on Wednesday. She was so good! They showed me how to put them in and care for them. They told me about the batteries and how to check if the hearing aids are still working. It was a lot to take in. But the best part of all was when we put them in Peyton's ears. She got the biggest smile! She was so happy! She was looking at everyone, everything, and focusing on all the new sounds.

I can already tell after a few days, she is crabby when I take them out for bed or a bath. She likes them. I feel like they have really opened up a whole new world for her. She responds when we call to her now. She can tell the minute Jonah walks in the room. And now she even gets startled by the garbage trucks that rumble down our street. She doesn't even try to take them out! Peyton LOVES her new ears! Jonah and I call them her "special ears". In case one of the aids falls out because she has rolled over, Jonah will come and tell me, "Peyton's ear has come out!" LOL I love it! We are so happy for our sweet girl!

Working on crawling.















Jonah loves laying on the floor with Peyton!

Organized Chaos

This week is going to be chaos. Peyton has PT Tuesday morning, a play date Tuesday morning, my mom flies in Tuesday afternoon, Peyton gets hearing aids on Wednesday morning, Jonah is evaluated on Thursday morning, and I am doing preschool tours on Friday. Whew!

Highs from this weekend:
-Time with great friends, new and old
-Family time with Jimmy
-Found a new church to call home

Lows from this weekend:
-Finding out how bad the county is doing financially, and they are voting to cut services that Peyton and Jonah both need
-Got an education on hearing aids and doctors in Charlotte from a new friend, and it was overwhelming

I am taking it all in stride and trying to breathe. Just looking for the clouds to part and a revelation from God that it's going to be alright. Jim and I can't help but compare what we left behind in services for Peyton and Jonah, to what we are barely getting here (it is almost embarrassing admitting what great help we left behind). It makes us want to pack it up and call it a "good try".
But we felt called here. Not only for Jimmy's job, but for the people that we are suppose to meet. The people we are to interact with, and hopefully touch in some positive way. We have grown a lot as a couple, as a family, and as God's disciples.
Is it hard? Absolutely! Is it going to kill us? Probably not.

We are on a new adventure. I feel in these 6 and a half years of marriage we have been on a LOT of adventures. Some good and some bad. But I think this is a good one. Here's to hoping.

Here are a few pictures of the kids.
I took Jonah on a play date to the Discovery Kids Museum they have here. It is AMAZING! Shocker, Jonah's favorite areas were the water table and the train table.

I am also a proud Mama to announce that my baby girl is officially sitting up all by herself. It was nice to give her a bath for once without her laying down the whole time. She is getting to be so much fun!