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.

MRI and milestones

Last week Isaac had a MRI on his spine and brain. It was a long MRI so he was sedated and the test last about 2 hours. His neurosurgeon ordered it to get an idea of how he has healed from his spinal surgery and to check and make sure his ventricles in his brain and everything look ok. We have been very fortunate that to this point, Isaac has not needed a permanent shunt placed in his brain. We constantly check his soft spot to be sure it is soft and his head measurements are taken often to be sure his head is not growing too quickly and possibly developing hydrocephalus. Isaac did very well with the sedation. He came out of it quickly, ate and we headed back home. It was a busy day, but we made it home just in time for dinner. I had waited about a couple days before calling for results and yesterday Isaac's neurosurgeon actually called me with the results. His neurosurgeon is great in explaining everything, wanting to know about Isaac's progress and taking his time in answering my questions. Isaac's doctor was very happy to hear about all of the exciting things Isaac has been doing (I'll list those in a moment). Overall, we have good things to report from the MRI. There are a couple of things that sound alarming, but I think they will be ok. His ventricles in his brain are a little larger than the last MRI. They are larger than a "typical" child's ventricles, but they could just be what Isaac's norms are. This can be common in children with various types of spina bifida. He will continue to monitor Isaac's progress in meeting milestones, the rate of his head growth and the ventricle sizes. Right now he feels everything is ok in this area, but we will go in for a check-up in a couple of weeks and he will have another MRI around his first birthday. The exciting news about the MRI showed that his spine is healing really well from surgery! Overall, I am happy about the results. I am happy that his spine is healing and I continue to pray that his brain will remain stable and working properly so that he will not need a permanent shunt placed in his brain.

Now onto his exciting milestones!

* Isaac said his first word- Da (he doesn't always say it often, but he knows what he's doing when he says it. He looks right at Dan, grins and shouts, "Da!") Isaac definately has Daddy wrapped around his little finger.



* Isaac figured out how to roll from his tummy to his back on his own! I don't have a picture of him in action, but here is a picture of his proud, "I did it", grin.

* Isaac had his first food, oatmeal. He seems to like it. He will take the spoon while I am holding it and pull it himself. He wants to be big boy! He also digested it well!

* Isaac is into exploring with his hands and mouth. He is all about chewing (I think little teeth will be in soon), but also, he is going a good job of manipulating little toys and handing the toys from hand to hand. Below is a picture of this awesome toy Isaac is borrowing from his PT. It entertained him for about 15 minutes today!

Merry Christmas and Happy New Year!

Isaac had a wonderful first Christmas and New Years! Here are some pictures of his first Christmas and New Years which we spent with grandparents, aunts, uncles and cousins all over Ohio!