Annual blog post.
I was just begging for a new video camera on Amy's blog and figured it was time to update my own.. which is severely behind.
So.. what have I been doing you may wonder... It's been a heck of a year.
As you know, I was pregnant with baby number 2, a boy. Emmett was born November 1st, 5 days late. The longest 5 days of my life.
A couple months before I was due to have Emmett, my Mom was diagnosed with breast cancer. This is tough news to hear at any time, least of all when 9 months pregnant and really hormonal. Mom was very lucky and ended up having two surgeries and some radiation after her pathology came back clean in her lymph nodes. Huge relief. Take that Cancer! You couldn't beat my Mom!
Mom was able to change her plans a bit and come visit with me before her surgery, which was part of the reason we were bumming that Emmett was late and didn't get to meet Grandma till one of the other catastrophic events of the past year.
So... Emmett was such a great baby. right from the start, he was only getting up once in the night which was so wonderful.. and then at some point ( 5 weeks) he started having blood in his stools. Yeah.. it was alarming. So I quit eating dairy rather than stop nursing him. I missed cheese, but loosing all the pregnancy weight and almost an extra 20 pounds was great! I anticipate gaining it back once I start eating dairy again.. if I CAN... I have heard that sometimes being off it for a long time can affect your ability to process it. *sigh.. Will I ever eat pizza again?
We all went on this no dairy diet ( at home at least, and we really didn't feel deprived once we added soy back in.) and got to try a lot of really good recipes. The really good news is that there is no dairy in BACON.
In April Emmett was 5 months old. In April on the Friday before easter Chris came down the stairs saying that he thought Emmett was having a seizure. I told him he was crazy and it was just him choking on some post nasal drip from the runny nose he always seemed to be having. The next day he did it again when I was leaving for work. His eyes would roll upward, his body tensed up and his arms and legs lifted up. It lasted seconds, but would repeat over and over to a count of about 10 times. Saturday evening it happened again and Chris found a video on you tube of a child doing what Emmett was doing, and now we had a name, and something to google. Infantile spasms. Infantile spasms is an extremely serious form of epilepsy that only infants get. So on Sunday, when he had his 4's episode of these spasms, I called the nurse line for more information. She said that I should go to the Children's hospital to Emergency and have him looked at. I did.
At first it seemed like they thought I was imagining something and were just going to send me home.. and then he had one there and knew it was unsettling. They gave him and EEG and glued electrodes all over his little (BIG) head. Apparently what they saw was textbook Hypsyrithmia ( chaotic brain waves) and can be devastating to Children, severely inhibiting their development. The neurologist came down and told me that they saw hyps in Emmett's EEG and that they would admit him to the hospital to treat him for Infantile spasms. All I remember really was the Dr. telling me that is was very serious and they would begin treatment right away.
Even now it is so surreal to think about all this. I never really felt like it was happening, and I was in some crazy dream. Emmet started on prednisolone ( a steroid) while we waited for insurance to approve the standard treatment drug ( ACthar gel) ACTH which comes for the bargain price of only $30000 a vial. We had a three week treatment and used three vials. I am very glad I have insurance, and that they approved it even though it vastly exceeded their weekly maximum. ( by a lot I think)
Emmett had his last spasm on May 1st, his last injection on may 8th (Oh did I forget to mention that we had to give him a shot in his little baby thighs every day?). So now he has been seizure free for almost 3 months. We feel so blessed. We are very thankful for Emmett's health, and for friends and family in general. You go day by day because you have to. We don't want to get ahead of our selves.
Emmett has no real delays for his illness. Possibly about a month behind when he was having spasms and treatment. He is sitting, almost crawling and all those things babies do at almost 9 months old. His infantile spasms were the kind with the best outcome, idiopathic. This means that there was no know cause. His MRI showed no problems with his brain, and his development was normal prior to the spasms starting. So we don't know why... and really since it is gone, I don't care. My son is back, and the ordeal is more than I'd wish on anyone... When on ACTH all he did was eat and cry.. The steroids make them get big puffy faces. We had to go to the clinic twice a week for blood draws, stool cards ( to check for blood) and to get his blood pressure check because the drug can cause hypertension. He never smiled or did any endearing sort of thing that babies do. It had gotten to us and then when we finally got a smile and then a laugh when he was almost weaned off his medicine we were overjoyed. You can't go back from that. You just want to squeeze them and never let them go.
It was really hard to leave him at daycare and go to work. I never loved a weekend so much. I'm sure I'm missing alot more details... but man.. what a couple months...
The more recent thing is that we applied for a loan to build our addition last week. We got a new plan this year, and a new builder. So.. I'm sure I'll have a remodeling blog post in the futire.. and if it doesn't happen.. a moving blog! But I hope it doesn't get to that.
Go give someone you love a hug.