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.