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.

Ventricles

(updates on our little stud)

We met with Isaac's neurosurgeon on Monday for a check up and to view and learn more detail about the MRI images from his last scan. When I talked with his doctor a couple weeks ago on the phone, he mentioned that his ventricles were a bit larger than the last scan, but it was not alarming or urgent. After seeing the pictures we could see that they were bigger and his head circumference is growing a bit faster than it should. This is a concern because it means the fluid filled space in his head is getting bigger and it may not be diverting all of his spinal fluid correctly. He is developing as he should and is not showing any clinical signs of hydrocephalus. Hydrocephalus is when there is too much pressure in the brain caused by fluid build up in the ventricles. Right now, his doctor thinks that it is very likely Isaac will need a permanent shunt placed in his head to help him divert the fluid. Many children born with spina bifida, need a shunt to help with fluid. A shunt is a little plastic tube that goes in his brain and then usually goes to the abdominal area to release the fluid to be absorbed by the body. In times when the tubing can not be placed in the abdomen, it goes to the heart. Because of Isaac's upcoming abdominal surgeries and his unique anatomy, it is very possible the shunt would need to go to the heart.

Ultimately, it is not the end of the world if Isaac needs a permanent shunt. Most importantly, we want to be sure he has whatever he needs to help him reach his fullest potential. We do not want any hydrocephalus to cause adverse effects on his brain and development.

At home, just as we have been doing, we make sure Isaac is not showing any signs of too much fluid and pressure on his brain. We check to make sure his soft spot is still soft and not bulging, that he isn't persistently vomiting or extremely tired and solemn. His doctor has reassured us that he does not suspect any of these to happen and if they do he will assess him right away. We have another MRI in early March to check on the ventricle sizes and his doctor is monitoring him closely. We have known all along that he could very likely need a shunt and we are lucky that he has not needed one yet. We completely trust his neurosurgeon and we know Isaac is in the best hands.

Like I said before, I know he will be fine if he needs a shunt and I know it is very likely he will need it, but I am still holding onto hope that he will not need one. It means one more surgery. It would mean shunt revision surgeries in the future.

I have debated all week about writing this post, but I decided to because I believe that with prayer, positive energy and belief anything can happen. A mother's love has to believe. Tonight, I ask again for prayers and positive vibes for Isaac; that his body, brain and spine will divert his fluid the way it should. That he will remain shunt free and that he will continue to develop and thrive.

Thank you all, for continuing to send love for our little man. He sends his love back to you!

Medical Appointments and Making People Smile

Medical Appointments: January has been a busy month full of follow up doctors appointments for Isaac, the ENT, Neurosurgery, and Orthopaedic appointments.

Overall, Isaac is getting better from an ear infection. He still has fluid in them, but it could take awhile for that to go away. No ear tubes are needed. Phew. Urology has reported that we need to meet with his team of urologists, ortho docs and colerectal doctors to begin making a plan for his "big" surgery. His big surgery is when they place his bladder into his body and break his hips to align them correctly. This big surgery is something I dread, but it will be good to have a plan soon, to begin that journey and move on. Hopefully in the next few months we will actually have a plan. The one thing I have learned about OEIS is that the only thing certain is that there will be uncertainty. Each case is unique in its own way and up until 30 years ago or so these children did not survive. With only a few children born with this condition each year, medicine is learning everyday about how to achieve the best repairs for our children. If I need to be patient to get the best repairs for Isaac, then I will be patient.




Making People Smile:
Some days it is hard to not ask, "why does Isaac have to endure such difficult medical issues?" It hardly seems fair. But I am learning, the world does not always work in ways that I think is fair. I am learning to look for the special gifts we have and not the deficits. I am learning that what might be lacking in one area, may be made up for it in other areas. Today, while taking a tour of preschools for Isaac's big brother, the receptionist was watching Isaac while he sat in his car seat while I checked out the classrooms. When I returned she kept telling me how chatty and smiley he was. She seemed thrilled to have gotten to sit with him and she told me it was such a gift to get to meet him today. I could tell she truly enjoy his presence. I realized then, he might be lacking movement in his lower body, but he makes up for it in his smile, his coo and his pleasant company he brings. His smile is a gift. His babble is a gift. His presence is a gift.