Yesterday, Edmond had surgery to have a G Tube placed. This will be helpful to him in a number of ways.
It will significantly reduce his risk for aspiration,
give him the daily hydration his body needs,
provide relief from his ongoing constipation issues,
provide a sure way to give him nutrition,
provide a sure way to give him his medication,
alleviate the stress that feeding time puts on him and on us,
allow us to focus on letting feeding time be a pleasurable and enjoyable experience.
Now the task at hand is to get him healed up and to learn how to operate the G Tube feed machine and how to administer fluids safely to him through his G Tube. Doctors and specialists, as well as parents of Lissencephaly children have assured us that this was the best thing to do for Edmond and will be a better quality of life for him as well as for our family. We are looking forward to using his G Tube in our everyday life. If Edmond is able to develop better eating skills in the future, we are always able to take the G Tube out if he can do well without it.
Edmond is so wonderful and easy to love. We love him to pieces. He's just been sleeping a whole lot since the procedure, but I expect him to have double energy once he is healed up well.
Wednesday, January 9, 2013
Happy New Year from the Segroves!
It's been a while since I've updated. I started work on Dec 11th and it's been nonstop crazy go go ever since. We are seriously so tired. The house is in disarray. The kids probably need a bath like yesterday... yup life is in full swing. Thank goodness for our family who helps us get through each day. We are blessed, I don't know what we would do with their help, seriously.
We've been on what I call a "vacation" from seizures, which has been the best news everyday for us. Edmond's been having many days without any seizure activity at all. It is such a nice day for us when he doesnt' have any. He is growing so fast and he is doing good in his therapy sessions. Adonis gets off work early on and takes him to physical therapy on Tuesday evenings and I get off early on Thursdays to take him to his occupational therapy. Edmond also still receives vision therapy and early intervention therapy. Edmond has been more active in kicking his legs and moving his arms, it's good to see him so alert and active which is definitely correlated to less seizure activity.
Edmond was recently fitted for a type of activity chair/wheelchair for baby/toddlers. This chair will function largely as a feeding seat for Edmond, it's been more and more difficult to feed him in our arms, but he is a good eater and he hasn't been clenching his mouth as much so that's been really good. We are waiting for his bath chair still and have one on loan from California Children Services in the mean time.
I just filled out a large packet for Edmond to become "institutionally deemed" and this way he will have Medi Cal as a secondary insurance to pick up any costs that our insurance will not pay for. Edmond is also being referred to a GI doctor to evaluate him for a G tube. Still waiting for an appointment, but this would be the next big evaluation and change we would have to take. Edmond doesn't get enough fluids because we have to thicken everything so he won't aspirate and it's a major concern of mine that his lack of fluids causes him discomfort in being able to pass bowel movements easily. We shall see what the doctor has to say about it's necessity. In the meantime, mommy tries to prepare food that will help Edmond in his digestive system... here is an example of what I prepare for him every day...
Butternut Squash with oatmeal for breakfast, vegetables, lentils and turkey meat for lunch, and pears/butternut squash, odwalla smoothie with barley cereal to thicken, pumpkin puree with cinnamon and almond/coconut milk blend. I blend everything in the magic bullet for him. It can be a tedious for sure.
I also have been pushing to get respite care hours for Edmond so we can help pay our Uncle Bob for all the respite care he already provides for us. Most of the paperwork has been completed so I"m waiting for our social worker to call us.
For strength and rest as we are both working full time and juggling everything.
For wisdom in what we should do about getting a secondary car, we are not sure if we should get a mini van now? or wait and just get a car that is good on gas... but we need to get another car soon (like within the next few weeks). We also are trying to decide if we should lease or buy a used car.... it's a big decision and one we don't want to be emotional about.
For Edmond's continued vacation from seizures and continued progress
For comfort and hydration for his little body and increased skills in drinking and eating
For Eden to sleep well at night and not climb into our bed, and for her to get potty trained already!
Thanks everyone for reading and for loving us.