We arrived in Salt Lake Thursday afternoon on 8/15/13 and went straight up to Layton where my dad had just flown in for a mission. We got to visit with my dad for a little bit before we all 3 went to my cousin Allie and her now husband David's wedding reception. It was beautiful and Allie looked stunning (as always). It was so good to see family that I had not seen in ages and be able to show off my little Abigail who made a wonderful name for herself, She was happy and cooing and loving the attention. :) Abi even ate her body weight in chips and salsa - oh, wait, no...that was me. ;) It was very cool though to be able to put a real face to the baby that had been "known" on facebook and all that. We all went back up and stayed in Layton for the night. My dad had to leave early in the morning but Abi and I got to sleep in and rest before our busy weekend.
So now here we are on Friday 8/16/13 and we have an eye appt at 1:00pm at the Primary Children's in riverton with Doctor Marielle Young..she was one of the names given by some parents on Utah Kids that deals with CVI so I was excited to see her. She essentially just confirmed that it appears Abigail does have CVI (coritcal vision impairment) where her vision is just fine, but her brain isn't always registering what she's looking at - so she may not always be seeing things. She did also say that Abigail is still a little farsighted, but nothing she would worry about or give glasses to. She said it was a +2 - not quite sure what that means exactly, just that it's there, but not bad. Dr. Young said that the shape of babies eyes are still evolving for a while and it could correct itself. CVI is also something that is supposed to improve with age. We are not sure the severity of her CVI, but that is not something we will be able to know until she gets older, and essentially, is able to tell us what she can and cannot see. The best thing for her right now is to keep up with therapy and all that, which we are doing through Early Intervention. Oh, one more thing that we are unsure of is her dang nystagmus - Dr. Nelson (Neuro) is sure that it is not a seizure, and I 100% agree, but Dr. Young (eyes) said it wasn't affecting her vision or affected by her vision - so I'm not sure why it's happening other than it is part of the CVI syndrome. But Dr. Nelson said something funny (he didn't realize it was funny) but he said, talking about her nystagmus, that it's kind of "abnormal for regular nystagmus situations". It's funny because it is truly AbiNormal. She has it, its not a problem, it's not affecting anything, but it's not completely the same as has been seen in the past. haha
We had Saturday and Sunday to relax before the storm of appointments. Saturday we did just that, relaxed, took a few naps, had a very laid back day. Then Sunday I went and spent the day with Abigail's Grandpa Petersen. Went to church with them, then Abi took a long Sunday nap while we visited and ate dinner, then that night there neighborhood had whats called a "walk-about" where 3 or 4 neighbors 'host' the walk about and the rest of the neighborhood walks from house to house and visits with the rest of the neighbors while enjoying snacks and drinks the 'hosts' offer. It was actually quite fun and something I think the ladies here in the valley would really enjoy!
Sunday brings us to Monday. Monday 8/19/13 we had a Cardio appointment at 8 in the morning in Riverton with Dr. Mennon and a neurology appointment at 3 pm in Provo. The cardio appointment was to check up on that heart murmur the doctor in Vegas so gently told me she had. The doctor here said he did hear a heart murmur along with a valve click and we would need to get an echo-cardiogram on her tomorrow morning..but since she wouldn't sit still well enough for the ecg, it would have to be a sedated procedure. So we got that scheduled for the next day at 8:45 in salt lake - I was supposed to have an 8:30 appt with nephrology at Salt Lake, so I rescheduled that for 11am and all was well. The ecg showed nothing abnormal and the valve click is apparently a relatively common noise. So we can forget about her heart! Yay, I was hating the idea of something else to have to worry about. (The nephrologist we saw also said that only about 2 out of 100 heart murmurs every end up being anything serious)
After the cardio appointment in the morning (the first one, on monday) we went over and visited Jaclyn and Dash. Boy, is that one handsome little man. He has teeth and everything! I think Abigail has started teething, there are times she just gets fussy for seemingly no reason, and has enjoyed biting on my fingers at times. No signs of teeth yet though. Like, no red gums or anything like that. But she's at that age, so I'll just keep my eyes out and keep you guys posted! But it was crazy to see the difference between Dash and Abi and the toll this disorder really has taken on her. It used to really bother me to see babies her age doing and progressing as they should be, but now it really doesn't. We have seen such progress in Abigail that that's really all I can ask for and she'll get it when the time is right..but it is still very cool to me to see other babies learning and all that. Like, things I have to look forward to while getting to enjoy the newborn stage even longer!
We went out to eat at sweet tomatoes with the White/Stephenson family (Abigail was a delight the whole time we were there) then Abi and I left from there and went straight to her Neurology appt. Abi finally got some sleep on the way to the appt, but it was cut short when I took her out of the car. I was so excited to have the neurologist see this thing that Abigail does as she wakes up that I've been trying to tell him about but have never been able to get a video of it..but she woke up and he still didn't get to see it. Also, because she was SOO tired she was NOT having being there, AT ALL. She screamed through the whole appointment, but wonderful Dr. Nelson is so patient and we worked through it anyway. We decided it definitely is her topomax causing the RTA and we will start weening her off of that slowly -It will take about 20-30 days to get her off of it completely. We are hoping that the keppra and clonazepam will continue to work up to par and we won't need to substitute the topomax for another medicine..he said it's unlikely, but we are gonna wait it out and see. What that essentially means is that we are waiting to see if she has any seizures within the next few weeks. oh, bugger. The dose we had her on that was working was 12.5mg in the morning and 25mg at night..now we have her on 12.5mg 2x daily for 10 days, then we will go to 12.5mg one time daily for about 10 days, then we will be off the topomax with high hopes of not seeing any seizures. We will keep her on the bicitra (which is the medicine for RTA) until she is off the topomax completely.
The next morning - Tuesday 8/20/13 - we had her sedated echo at 8:45, which I already told you the results. But the Nurse practitioner told me is was going to be about a 45 minute procedure and then about an hour in recovery which would put me 30 minutes late to my nephro appt. I called them to let them know and they said that is fine. So they sedated her, I went out to my car to grab my laptop to get stuff done during the procedure and stopped by the cafeteria for some breakfast..total of 15 minutes tops..I was sitting outside cardio with the intent to make a call before I went back in when they called me and told me she was done and they were ready to head up to cardio. I MISSED THE WHOLE THING! I was so bummed, because if you know anything about me, you know I LOVE to watch these things happen and I LOVE to be able to see what is inside my baby and just the body in general. I think it is so cool what they can do these days..but I missed it, the whole thing..So I did was any reasonably normal parent would do and asked for a copy of the echo...haha (see, that's funny, cuz it was not normal for me to ask that...they were actually a bit confused as to why I wanted it). Anyway, I have not yet looked at it, but I now have a CD with pictures of my baby's heart on it - how many of YOU can say that??? ;) Well anyway, we went to recovery where she did just fine, and ate 5 oz of formula then got discharged. After going back to cardio to hear the results that her heart was fine we then left and went straight to her nephrology appt..we ended up only be 5 minutes late to that!
Nothing really exciting happened at the nephro appt, we just essentially made the plans for what to do with the bicitra while weening off of the topomax. He also agreed that is was definitely the topomax causing the RTA because her acid numbers earlier this year were just fine and the topomax is a progressive thing. He also said that there shouldn't be any repercussions of the extended use of topomax, that after she comes off of that her numbers should return back to normal..we will get a blood test about 2 weeks after the last dose of topomax just to be sure. I did learn, however, that this nephrologist told me he did is residency at UMC..which, if you remember, is the hospital that treated me with such hospitality in Vegas that we just loved so much (intense sarcasm there) but I didn't hold that against him and he felt bad that I had such an awful time there. He also agreed with me that the doc didn't seem to be the keenest pediatrician he's ever heard about. When I told him they dosed me at 11.32mL of bicitra he responded "are you sure he was a pediatrician?" (he was joking, but it was still nice to hear that I really wasn't being silly or overreacting) So Dr. Grinsell (the nephrologist) took the dose down to 7mL twice a day, instead of 11mL 3x a day. That is so relieving! Now I can give all her meds at the same time every day and not have to worry about remembering a random dose in the middle of the day.
That is it for this post - i'll let you digest this one for now because I do have more information to add into another one later today. I figure this one is long enough for now. Enjoy.
This is AbiNormal
So happy at the cardio appt!
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