Who is James???

James was born at 39 weeks on August 29th 2009 @ 12:30am by an emergency c-section. During the entire pregnancy he was not much of a mover. He liked to just lay low and sleep a lot. No one thought anything about it; that was just James…a very easy going kid. On August 28th @ 10pm I was hooked up to the fetal monitor and we were watching James heartbeat go pitter patter, pitter patter, but it was not good enough for the docs and nurses. They wanted to see him moving more and kicking up that heart rate a little bit. After all he was 39 weeks! I told them that he was never a mover. The nurse was checking my cervix and hooked a monitor to James head to see if we can catch his movements that way. While she was checking she was tapping his head and he didn't move. After that moment, she called the doc and next thing I know I am having a c-section to get him out just in case he was in distress.

The c-section was quick and painless. Jeff got to see James when he was first born and was able to cut the cord. Such a great daddy son moment! They cleaned him up showed him to me but there was something wrong. He didn't cry, he only had a two vessel cord and he had low muscle tone. They took him to NICU to do some further examinations. I went one way to my hospital room and he went the other.

We got to see him the next day down in the NICU and they said he was still not making noise and started to develop some shakes, kind of like little seizures so they scheduled an MRI to see what is going on. We got those results back and it seems that James had several little strokes when he was inside me. The doc said they were old strokes and maybe nothing but they want to look further. They scheduled an EEG of his head and an ECHO of his heart. His heart was fine and his EEG didn’t show any seizure type spikes. Jeff and I were so excited but as we would soon learn, once we get excited about one thing, something else would happen...this time it was his eating. His suck/swallow reflexes were not developed. They put a bottle and pacifier into his mouth and he would not do anything with them, so that meant he would not be able to eat by mouth. They inserted a NG feeding tube into his nose. He was taking breast milk but in little quantities. He was able to eat 30mls but then started to aspirate and breath very heavy. They did a chest x-ray and he had developed pneumonia. He was on heavy medication to knock it out. Once he recovered they took out his NG tube and put in an NJ tube. This tube goes from the nose straight to the stomach. He was doing good keeping his food down but babies can’t go home with an NJ tube so on October 9th he got a fundoplication for his reflux issue and a G-tube. The G-tube allows him to eat straight into the stomach with a feeding pump. We finally got his feeding under control when he developed seizures. He had several more EEG’s and is on seizure medication. 

In addition to the issues mentioned above, testing found that James has a blood clotting disorder called Factor V Leiden; fluid in both ears; the optical nerve in his left eye is not fully developed and he is extremely far-sighted; and he has a chromosome disorder called 22q11.2 duplication which means he has an extra copy of a small piece of chromosome 22. 


TWO MONTHS IN THE NICU...  

On October 29th James was released from the NICU and had a good Thanksgiving with his family but on November 29th he was back in the hospital with respiratory distress. He had an allergic reaction to a vaccination and also developed pneumonia. We stayed in the hospital for 10 days. We celebrated his 3 month birthday back in Lutheran General Hospital, or what we like to call “Hotel LGH”. He was out just in time for Christmas and New Years but not without another complication. He developed this spasm that no one could identify. We were unsure if it was a GI issue or if James developed some other issue. We took a video of his spasms and sent it to a relative who is a pediatric neurologist. He said they looked like Infantile Spasms (IS), which is a form of epilepsy. In December, we had an EEG done through our neurologist, but the EEG did not confirm that they were Infantile Spasms. Jeff and I thought the spasms might be GI related so we saw several gastric doctors and they all said it was not a digestive problem. James continued to have these spasms throughout all of January and half of February. FINALLY on February 11th we got an EEG confirmation that James’ spasms are in fact Infantile Spasms. The treatment for IS is a hormone shot called ACTH. These shots are very costly and so far insurance has said that they will NOT pay for the treatment. We have been working with the insurance company to see if there is some way that they can pay for them and are still waiting on an answer.

So now we are faced with a dilemma…do we sit around and wait for the insurance company to agree to pay for the treatment, or do we go ahead and start the treatment and figure out how to pay for it later. As parents we need to do what is best for James, regardless of the cost. James has been through a lot in his short life and we are determined to make James the best little monkey he can be!

April 2010: James was on ACTH for 6 weeks and there was some improvement bit not enough for my doctor to keep him on it. He is worried about causing any heart damage. That is one good thing about James, his heart is in good shape for the most part.

July 2010: James is on 3 anti-seizure meds... Keppra, Clonzapam and Topamax... we will see how it goes, for now he is just sleeping so much.

Oct 2010: James is on 4 meds... Keppra, Clozapam, Topamax and now Sabril!!

Nov, 2010: James is off Sabril & Keppra... next to try is Banzel (when James feels better)

August 29th, 2010: JAMES TURNS 1

Sept 2010: James was diagnosed with Cerebral Palsy

May 2011: James is still having seizures like craZy so we started him the ketogenic diet (http://www.charliefoundation.org/) to see if it will help. He has been on it for almost 2 months, and we do not see much change, he is actually gotten worst. We will give it a few more months, and if this does not work we look into something else... maybe a VNS (http://us.cyberonics.com/en/vns-therapy/)

August 2011: JAMES TURNED 2
We bought a house, no more 2nd floor condo with 15 stairs. We are now in a ranch house.

October 2011: The diet did not work, James lost 6lbs. We are back to Pediasure and upped one of his meds

January 2012: Seizure monster has been showing his face less. We are in the works of getting a stroller/wheel chair for James. Once we get a chair, I will have to figure out how we are going to get around to doc appointments. I am unsure if the chair collapse or not. Only time will tell :0)

May 2012: We have a MRI, a MEG scan and a VEEG done to see where James seizures are coming from.  If they are focal, we could go for brain surgery.  He was not a candidate

August 2012: JAMES TURNS 3

September 2012: James started special needs pre-school after Labor day
James had a VNS placed into his left chest 9/24/12  (http://us.cyberonics.com/en/vns-therapy/)  Seizures seem to have lessened but we are not out of the woods.

October 2012: We turned James VNS off because we were thinking it was causing congestion.  

November 2012: James made his usual trip to the ER and admitted with The BIG P (pneumonia). We were there for 6 days.  He was a trooper and got over it quickly this time.

December 2012: I think he had The BIG P again but this time we just treated it at home with medication and oxygen. 

January 2013: I pulled James out of school due to all the flu going around IL.  He will go back sometime in March