Hello Friends!
These last 2 months have been fortunate in that Nathan has been healthy (and all of the kids for that matter). Of course, good health is a relative term in our household. Nathan has been free of upper respiratory infections and pneumonias for awhile. He was finally healthy enough to have his eye surgery today to unblock his tear ducts. It was a minor procedure. The only scary part was the anesthesia, but he came through like a champ (despite the 10 pokes for an IV). The doctor said this procedure is 90% successful, so we are hoping that Nathan will catch a break and be in the majority percentile for once. His blocked tear ducts have caused him numerous eye infections since birth and constant tearing, so we hope this will be a relief to him.
Now, on to the bad news. We have two pieces of bad news. The first – Nathan’s nurse & godsend, Sandy, fell 4 weeks ago and broke her ankle pretty severely. She underwent surgery last week and is still waiting to find out her recovery eta. We are assuming she will be out thru the summer, but you never know. She does come to visit occasionally which really perks up Nathan. She visited last week, and when I asked how she arrived, she said she drove herself. For those of you that know Sandy - picture this: Her broken, swollen, partially casted right foot was propped up on the console of her Lexus. The left foot maneuvered the pedals. All I can say is if you live between El Dorado Hills and Folsom, please watch out. Oh, and did I mention she broke a toe on her left foot while hobbling around? Besides an entertaining story, the impact of Sandy’s fall has left us with a daunting schedule. The first week, we had very limited help with our Friday nurse filling in where possible. Since then, it has been “nurse du jour”. Although we have liked all of them, except one, it has made life very hectic for us. Not only do the nurses need training every day, but they also want to chat and learn about Nathan and our family. Sounds sweet and endearing, right? I know this must sound ungrateful, but I have no more time to make “new friends” on a daily basis. I need “help” with no small talk. And I would prefer not to have to teach another nurse how to use a feeding tube / pump (each nurse requires training on this 3 times during an 8 hour shift). Don’t they teach this in nursing school? Most of the nurses have previously worked in hospitals. Don’t they teach this in a hospital? This should be one of the mandatory job qualifications. Unfortunately, we can’t live without the help and still juggle our jobs/other kids, so we take what we can get. It is better than nothing. And, the nurses really have been endearing.
Onto the 2nd bit of bad news. Nathan’s seizures have worsened. Just when you think it cannot get any worse, it does. He has multiple types of seizures daily. Hundreds of times each day. For the last few weeks, I have watched and held him while he has seized almost every minute for hours. How can this be? Why has it gotten so bad? We have so many questions that no one will ever be able to answer, although the neurologist explained that the seizures create pathways which enable more seizures. Nathan is missing his corpus callosum (the part of the brain that connects the right and left hemispheres), so it was quite a surprise when the neurologist suggested a corpus colostomy to remove this part of the brain. Apparently, pathways have developed between the hemispheres – enough to cause full brain seizures but not enough to give him the cognitive development we so desperately wish for him. Nathan is a trooper, but this is really taking a toll on him. He started a diet called the “ketogenic diet” last week which we hope will improve the seizures. It is a high fat, very low carb diet. It is also a very precise diet such that we have to measure the formula powder on a special scale to the prescribed # of grams. He cannot take many of the medications we give him including Tylenol, or any liquids since they are all sugar based. Our pharmacy is researching carb contents of all of his regular meds to find the right substitute. The goal of this diet is to have him in a state of ketosis. Doctors don’t really know why, but it has proven results of improving seizures in kids like Nathan. If you want to know more about it, feel free to google it – lots of info on the web. We are slowly transitioning Nathan to be sure his GI system can handle it so it will probably be another week before we know if this will give any improvement. We’ve been told of many success stories, but just like everything right now – we no longer want to hear about the statistics or the miracle success stories. As crazy as it sounds, the more success stories we hear, the more unattainable they seem for us. We just want to write Nathan’s success story. The neurologist has also mentioned procedures and medications that are in clinical trials now that may someday be able to help Nathan’s seizures. For now, we just hope that this diet gives him some relief.
For the fun stuff, Aunt Gloria & Uncle Kevin spent a week with us last month. As always, we had a great time with them. During their visit, we celebrated Madison’s kindergarten graduation. We are going to San Diego in 2 weeks for our first family vacation in a long time. We plan to go to the zoo, Lego Land, Sea World, etc.. Aside from some of the challenges (pushing a wheelchair thru sand and entertaining a baby on a 10+ hour car trip?), we are really looking forward to it. In August, I will be taking Madison and Zachary to Indiana for my 20 year high school reunion (where does the time go???). And in between, Madison will be going to Disneyland with Uncle John & Aunt Kelley. And then school will start up again. Whew!
Sorry no pictures this time. We have not gotten a chance to download any of our pics. Stay tuned…
