Rockin and Rollin

The big day arrived.... Isaac's first wheelchair came!



After a visit at my parents house, the boys and I arrived home to Isaac's brand new ZipZac Chair*. We waited until Dan got home from work for Isaac's big inauguration of his first chair. I thought about this day for a long time. Three months ago, I am sure I would have been very sad about seeing him in a wheelchair. I would have felt like I was giving up on his mobility. Well, this day arrived and I have to admit, I did get pretty choked up just thinking about Isaac in his chair. But, I wasn't choked up because he was going in a wheelchair. I was choked up because this was his "step" to mobility. His step to independence. A sign he was moving farther away from babyhood and closer to toddlerhood. I felt the same way when Gabe took his first wobbly steps. Isaac was on his way to taking his "first steps". He might be rollin instead of steppin, but this chair is Isaac's way of moving and I felt nothing but pride and hope for him. Regardless of how he gets around, Isaac is going to rock it!



Big brother Gabe was just as excited as Mommy and Daddy about Isaac's chair. His immediate respose was, "now Isaac can chase me!" Gabe did his "ready, set, go!" chant for the big race that he must have envisioned he and Isaac doing the moment Isaac got in his chair.



When Isaac didn't quite get the chase game, Gabe immediately took the wheel for his little brother and pushed him around. Isaac seemed to enjoy this ride until big brother tried a faster push and let Isaac fly solo. I am sure before we know it, Isaac really will be chasing Gabe and rollin faster than we know!




* for more information about ZipZac chairs please visit, www.myzipzac.com

My Beautiful Holland

For any parent that has a child with special needs, I am sure you have heard the poem, "Welcome to Holland", by Emily Perl Kingsley.

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.



Exactly one year ago today, I heard the pilot tell me I would not be going to Italy. Rather, I heard, "your flight will be landing in Holland." One year ago today, my smooth sailing flight to Italy turbulently rocked. It jolted my heart through miles of tears and unimaginable pain until that fateful June night when I finally stepped off my jet plane and saw my Holland. My BEAUTIFUL Holland.




After 1 year of being in Holland, learning the language and admiring the culture of Holland, I can honestly say, I can't imagine being in Italy. I am in Holland and it is beautiful. It doesn't take away the pain of the experience. One year ago today, my world as I knew it would never be the same. My heart broke and my dreams had to change. I was right, my world isn't the same....I have been through more pain than I could have imagined, but I have grown. I have gotten stronger. I have more love in my heart than I thought I could have. Holland is beautiful. Now I know I was always meant to be in Holland. This was where I was meant to go.

This is what I see in my beautiful Holland.

Smiles. Smiles beyond belief. They may be toothless, but I have never seen such a smiley baby.

Laughter. I knew Isaac would bring laughter to this world. After all, his name means laughter. Not only does he bring laughter, his laughter is contagious.

Courage. Courage to look to the future and only looking with positive eyes. Nothing will stop him.

Strength. I have had one surgery in my whole life and that was to safely deliver Isaac. It was scary, but I got through it and came out stronger. Isaac has been through two major surgeries in his short little life and not only comes out stronger, but makes others stronger too.

Hope. He makes me dig deep into the depths of my soul and live in a state of constant hope and in constant belief in miracles.

Faith. Isaac helps me understand sacrifice. He brings me closer to God and opens my eyes to the secret of life. If I could heal Isaac, I would in an instant, but I know the only way I can help is by prayer and belief. Isaac comes to us exactly the way he is for a great purpose; I am sure of that.

Love. Just love. It's that simple. If the world just loved, imagine how beautiful this world would be.



Yes, My Holland is Beautiful.

The village of rockstars

(Isaac says, "I love watching Buckeye Basketball!")

"It takes a village to raise a child"

I never quite realized the impact of that little saying until this year. And we have a village. Actually, we have quite a village of rockstars that is, helping us raise our little guys. Anytime we have a big appointment or surgery our family and friends step up and help us. They are sure that Gabe has a place to stay and they give him fun activities to keep him busy and keep his mind off mommy and daddy being away. We know he is well cared for and that gives us tremendous comfort. We have awesome doctors caring for Isaac. Not only are they ridiculously good at medicine, they also have Isaac's best interest in mind. They see his quirks and his talents. They are part of our rock star villagers and I am glad we found. Even if we have to drive 2 hours to get to them. And of course I MUST take note of all of the "behind the scenes" workers that are prayer warriors for our little Isaac and our whole family. I want you to know that all of your prayers, positive thoughts and loving energy vibes towards Isaac are truly having a positive impact on our little guy! He is a tough little man, but you warriors, well, you warriors are making him even stronger. His appointment last Friday was very long, but it went very well! We were really happy with what we heard. Here's a summary...

Isaac had another MRI which he was awake for this time. He did really quite well during it. He fussed a little being strapped down, but luckily it was quick. After this, we met with Isaac's neurosurgeon. He compared this MRI to his scan in January and we have great news. The scans looked the same! This means that his ventricles are stable! Isaac's ventricles are still large but they haven't gotten bigger! (What did I tell you, villagers?!) This does not mean he is completely in the clear for a shunt, but it does mean that right now he doesn't need one. We can continue to hope and pray that he won't need on in the future. We will go back in three months for another MRI to continue to monitor his head. We also got a prescription for his first wheelchair (the zipzac chair). This chair is so great and it will be so wonderful for Isaac to be able to get the hang of moving around by himself; something he is so ready to do. Check out the chair www.myzipzac.com

We also met with his colorectal doctor who was happy with his progress. There is not a lot of news on that front except for I think he is also the baby whisperer. After being woken up from his short and only nap of the day, Isaac was needless to say, pretty fussy. His doctor lifted him up and talked so sweet with him while Isaac played with his name badge. Isaac enjoyed "chatting" with his doctor.

And finally we met with the ortho doctor and urologist who are planning his next big surgery to place his bladder inside and do his pelvic oestomies. This is going to be a big and long surgery and will involve three surgeons so it is still in the works to find a date. His urologist would like him to be at least a year old and at least 20 pounds. It looks like it will be sometime this summer or the coming fall. We should hear back in a few weeks with a date. We are hoping it will be sooner than later.

Villagers, I just can't thank you enough. For the days that I am weary, I have comfort in knowing that all of our rock star villagers are silent warriors praying for Isaac. I am humbled by everyone's support. Rock stars, you are helping Isaac continue to rock on!

Our little Cupid

Since today is the last day of February I thought I would share some ways our little Cupid that captures our hearts.

Isaac is getting stronger and sitting with his hands supporting him in a tripod sit. His physical limitations are teaching me patience and awe. He does not reach physical milestones at the same rate as other children his age. His physical disability means it takes him longer to do things like roll or sit. I am learning to just take his milestones as they come and give him all the tools he needs to achieve, but also, have patience when they take longer. I am also realizing just how "awe inspiring" it is to see him do things like roll, or sit. It must be pretty tough to sit, when he may not have feeling below his waist. His pelvis is splayed and his intestines and bladder are outside his abdominal wall, yet he is still progressing. It is pretty amazing to witness.



He really loves playing, especially when you are giving your undivided attention to him. Grandmummy is very good at giving Isaac lots of attention. I think that she enjoys playing with him, just as much as he loves playing with her.



He cuddles his little head into you when you hold him and I especially love when he falls asleep in my arms.



He looks like a mini daddy, and if you check out Dan's baby pictures, they look undeniably alike. Isaac even is rocking the same fuzzy duck hair like his daddy had as a baby.



Isaac is starting to outgrow his 3-6 month clothes. It is always fun for me to dig into the clothes bins and reminisce as I sort through Gabe's old clothes for Isaac. Isaac is also eating more solids. He has been a pretty big fan of yellow veggies and fruit, but is not as great about eating the green beans and peas. He has some separation anxiety right now and really wants held by mommy a lot. This is very endearing, but is making it hard to get much done these days. Who needs a clean house anyway, right?

Isaac has a big day Friday. We will be heading down to Cincinnati for appointments all day. We meet with Neurosurgery, Orthopedics, Urology, his his colorectal doctors. He also has an MRI on his brain and a renal ultrasound to check his kidney function. Our goal for the day is to check his brain ventricles, and to begin to plan his "big" surgery. The big surgery is when they will place his bladder inside and correct his pelvis (currently the bones are splayed like an open book.) We hope that Isaac will hang in there on Friday and pray that we will get good reports from all of his doctors.

2 ER's, 1 long ambulance ride, but luckily just a virus

What parent says, "luckily just a virus?" Well, I do today because between a cold virus and hydrocephalus, I will take the little virus any day. As I have mentioned in previous posts, we check daily for signs of increased pressure in Isaac's head. Some signs that his brain is getting too much pressure caused by spinal fluid (hydrocephalus) are extreme sleepiness, excessive vomiting, a bulging soft spot, lack of appetite. Well, this Tuesday, Isaac was showing 3 of these things.

I woke Isaac up, fed him and packed him into his carseat for our Tuesday morning trip to Delaware. Gabe goes to preschool once a week there with his cousin. My sister, Amy and I take turns watching the little siblings (Isaac and his cousin Mallory) while Amy and I help out in the classroom some weeks. Well this week, Amy was watching Isaac and I was helping out in Gabe's class. When I got back from school, Isaac was sleeping and Amy said he was not his usual self. He was really sleepy and just seemed a little off, not like his happy self. She had some errands to run so I stayed with her 2 little ones and my two little ones. Isaac still slept and finally I woke him up at 1pm to feed him. He had not eaten but once and usually he eats at least 2 or 3 times by this time of the day. As I fed him he fell asleep. I felt his head and his soft spot was pretty puffy. It did not feel sunken and soft like it usually does. This concerned me, but I tried not to over react and check again in a little bit. He finally finished eating. He wasn't fussy at this point, but he was very quiet. Pretty unusual for him. He then threw up quite a bit, twice. This was the sign that really worried me. I put the three signs together.... increased sleepiness, vomiting, and a puffy soft spot. I was sure that this was it.... his pressure was increasing and shunt surgery loomed in his very near future.

I called Dan, who by the way was in LA for work and would be returning home the next day. Great timing, right? We both agreed we better call Isaac's neurosurgeon. We called him and he suggested we take Isaac to our pediatrician and then they could evaluate him and possibly get a CAT scan in Columbus if they felt we needed to. I headed home from Amy's which was a half hour away, called the ped. They told us to go straight to Nationwide Children's Hospital's ER. We got there around 3pm. I have never been to an ER, but I now know that I should just write out "All about Isaac" because I told his story many times. They took Isaac's temp. and he had 101 fever and he was still pretty tired. Finally, they did a CAT scan which showed increased ventricles that we pretty large. The neurosurgeon on call at Nationwide didn't feel like it was urgent to put in a shunt because there was still space between his head and his skull, but perhaps he would need one soon. I was very clear that no matter what, he would NOT be getting a shunt from anyone but his neurosurgeon in Cincinnati. He knows Isaac and we trust him. Nationwide suggested we transport Isaac in a mobile transport unit (basically a high tech ambulance) to Cincinnati's ER. I really just wanted to take him home and feed him (he wasn't allowed to eat at this point because we didnt know if he would need surgery that night or the next morning) and then take him to Cincinnati myself, but I wanted the best for Isaac. So we headed to Cincy at 10pm by ambulance to the next ER. By this time Dan is 2000 miles in flight home, I am riding with Isaac, and my dad and Gabe are driving down 71 South to Grammy and Papa's (Thankfully Dan's parents live in Cincy so we had a place to stay and thankfully my dad was helping me out with the boys since Dan was out of town). We went to Cincinnati Children's ER and took the CAT scan films. The neurosurgeon's nurse practioner who has known Isaac literally since the night he was born, came in and looked at Isaac. By this time Isaac's soft spot felt a little better and his fever was going down too. The nurse practioner and a radiologist reviewed and compared his CAT scan to his last MRI and thankfully the images looked the same. That meant he did not have too much pressure. It turns out that fevers can cause baby's soft spots to bulge a little bit and cause other symptoms that are the same as hydrocephalus. We left the ER at 3:30 and went to Grammy and Papa's for the night.

The next morning, Isaac's neurosurgeon called me directly and reassured that it appears that Isaac's viral bug was causing these symptoms. We were so relieved that Isaac "just had a virus". He has been pretty under the weather the past two days, but his fever finally went down this evening and he started to perk up and chatter at dinner tonight. I think he is on the mends and hopefully our happy little guy will be back to his happy self by the weekend and hopefully we will not be visiting an ER's again!

Happy Valentine's Day

Isaac sends love and hugs to everyone this Valentine's Day!


He has been eating like a champ. Last night he ate a jar and a half of pears and a bowl of oatmeal cereal!


He is getting stronger and pushing up well on his arms while he plays on his tummy.


He is finding new places to play!

Brotherly Love

I have to share this, because I think about it everyday. I think about how lucky we are that Gabriel (Isaac's big brother) has taken to his little brother so well. We couldn't have asked for a better big brother for Isaac. As much as we know God has a special plan for Isaac, we know God knew exactly what He was doing when He made Isaac and Gabriel brothers. Despite all of the changes that have happened in Gabe's life since Isaac was born, he has never once complained or even shown jealousy towards Isaac. He has only given him love and we have seen a compassion with Gabe towards Isaac that he does not give to everyone. Gabe is a very special boy. He does not see Isaac's lack of movement. He knows Isaac has a colostomy bag and he sees us change his diaper, but never once, has he asked why does Isaac poop in a bag. He doesn't even notice that Isaac does not have a belly button. He just accepts. I once told Gabe we need to massage Isaac's legs since he can not feel them and Gabe didn't blink an eye. He just kept on playing right along side his brother like nothing was different about him. I think Gabe's view of Isaac is the closest view of how God sees Isaac. Perfect ; just the way he is meant to be. He does not see Isaac's deficits, rather he see that he has a brother to love on, play with, read to and be with. The love Gabe gives Isaac is nothing but precious and pure.

Gabe cuddles Isaac.


Gabe shares his beloved "CC's" with Isaac.


He adds a player for Isaac when we play games. "Mommy, you be red, I be blue and Isaac be green," is usually how it goes.



Gabe reads books to Isaac.


He wants Isaac to play with him at the playground.


And, he doesn't even mind sharing his special hang out time with daddy.


The first person he kisses hugs and says, "I love you" to each night is Isaac.


And while, they have their own unique personalities and looks, they can't deny they are brothers. (these pictures just make me laugh so I had to share.)



I once felt bad that Gabe would not have a typical brotherly, rough and tumble, football, tackling, push me down relationship like most brothers. I felt like Gabe would be missing out. I felt like Isaac might be jealous of Gabe. But now I know Gabe and Isaac's relationship runs deeper than sports. I am sure they will fight, I am sure they may wrestle (in fact, I just caught Gabe laying top of Isaac just last night, giving him "love". I thought Isaac was squished but when I got Gabe off of him, Isaac was laughing). I am sure they will both get annoyed with each other. But I can tell they get excited to be with each other. Isaac looks at Gabe with big eyes and chatters like, "he knows what I mean". Gabe talks to Isaac and wants Isaac to be involved in everything Gabe is doing. Now I know, they already have the perfect "brotherly" relationship and they define what brotherly love is.