Anna's weight never picked up like we had hoped so at the advice of the GI we had Anna's feeding tube put back in last Friday. She did well with the procedure and we came home the next day. She was very sore and still is just a bit, but otherwise all went well. She is tolerating her feedings better than I ever could have imagined after the way things were last time. She calls it her belly button and every night at bedtime she says, "You gonna hook me up?" It is cute to hear her say that. She still is totally underwhelmed with the button but I actually am glad to have it back, sort of. As we head into flu season and just overall sick season it will be nice to have the guarantee of fluids and calories despite illness. I know she will gain and grow in strength with this and so we are OK with it.
Another change is in my emotions. Not too many posts ago I had posted about all of Anna's neuropsych testing. Yes, some of it is true but most of it, in my opinion, is crap. My child does not have borderline intelligence. She is smarter than anyone gives her credit for, even me. She is so witty all of the time and witt requires intelligence. Have you ever met a witty dumb person? Yeah, me either. She is doing so well in school and I could not be happier with her progress in all areas. She is also in tumbling now and amazes me there too. I think the sadness about all that happened to her will always come and go but I must always remember her true potential cannot ever be measured by tests and numbers.
We have started a fund raising page for Anna. We have tried very hard to never ask for nay help but our resources are getting spread thinner and thinner. We do have insurance but it does not cover deductibles, copays, time away from work (and I am always out of vacation time), gas to and from appointments, etc. We do not qualify for any state or federally funded programs except for the medicaid waiver program and we are on the waiting list but it is about 5-7 years long. I do not want to depend on others but I am swallowing my pride this time. So if you feel like it and you are able please think about making a donation to Ann's fund. If you want to support us but cannot afford to then please just spread the link. That will also help us in ways you can't imagine. Here is the link:
Carly and Gabe are doing well also. Carly's progress in school never ceases to amaze me. She is also learning a lot of life lessons this year which are far harder than the educational ones. She is learning what it means to have some tolerance. She is learning how to deal with people who consider her sister "gross" and do not want to be around her. She is such a sweet child and I love her so very much. I am so proud of the little lady she is becoming! Gabe, oh my little Gabe. He is chattering constantly and although we can't understand much of it one word is crystal clear- EAT. He says it all of the time and he means it too. He is growing up too fast but the other night Kenneth and I were remarking that we are beginning to see a light at the end of the tunnel (the baby tunnel) where someday in the not too distant future we will not have to be chasing a baby around the house. Of course we will miss the baby days a bit but we look forward to the kids gaining more independence (and us gaining more sleep, naps, and time away together.)
Thursday, September 6, 2012
What a whirlwind! So I think I left off where Anna was about to be inpatient at Cook's for her vEEG. It went OK. Annoying as usual and kind of like being in a jail cell with a 4 year old but it went OK. You are allowed to leave the room 1-2 times a day for no longer than 30 minutes to go downstairs or wherever inside the building you want to go. You can go to the playroom as much as you want on your floor but there cannot be another vEEG patient in there because there is only 1 video hookup. It could be so much worse but geez it is long when you are in the middle of it. There are always awesome movies to pick from and watch but Anna is not at all big on sitting still so we watched Judy Moody and The Not Bummer Summer in bits and pieces over and over. They stopped her tegretol when we got there so that also meant she was not at all sleepy, did not nap, and became even crazier than usual. She threw papers at me and told me she was going to kill me. She growled at me. And then in the very next breath she was hugging me and kissing me and telling me how much she loved me. I kept telling myself how people endure so much worse and that I only had to make it through 48 hours of this. Then the 48 hours were up and the leads came off and she went to MRI. I actually had a bit of peace in her room waiting for her until the EEG tech came in and let me know they would be putting the leads back on after the MRI and sending us home with them. I convinced Anna that as long as we got to go home it would all be OK. And it was. She did well them at home aside from missing the whole first week of school. I was SO nervous about her starting school this week but my fears were put to rest when we were met at the school's doors by her teacher, the nurse, the diagnostician, and an aide. They were so kind and really seemed like they already cared so much for Anna and they had not even met her yet. They said they were far more nervous than I could have been and that actually gave me comfort. You have to care and want to do well to bother being nervous. I was able to leave her without even shedding a tear. She did great the first day and even used the potty with her class. The second day- she was SO over it already. She said it was "not faew (fair). I unt (want) to say (stay) home wiff (with) Daddy aww (all) day." But she went adn had a great day again. I am so at ease now and I think as they are getting to know her better they are also more at ease too. They asked if it would be OK to make a potty chart to encourage her. Um, heck yeah its OK! Carly is doing well also. She scored at a 5th grade reading level in the first week this year- she's in third grade. This is the kid who started last year in remedial reading. The dyslexia program at her school is amazing and has brought her so far. I am so proud of her! Gabe is all over the place and each day brings about a new word- his current favorite is "eat". So about the vEEG- just like when you take your car to the shop the noise stops, so are things with Anna. There was not a seizure on the EEG but there were things that indicate seizures are taking place. It is called interictal epileptic discharges. I'm not going to tr to explain because I can't. I don't really even understand it. The activity s coming from the left temporal lobe which is interesting because the cyst they were suspecting to be the cause is in the right temporal lobe. Who knows? We follow up on October 3rd and hopefully we will get more answers then. Until then she is back on her regular meds. The EEG also showed a pattern of slowing which is part seizure and part encephalopathy. I hate that word, encephalopathy, and I hate knowing that the words "cerebral dysfunction" and "encephalopathy" are used when describing my child's brain. Her brain is so much more than that. Anyway, I have been in a pretty dark place lately but I think the sun is coming out again.