ABI IS A ONE YEAR OLD?!

     Today is Abigail's first official day as a 1 year old. I can honestly say that with even all the 'happs' of the last year for Abi and our family, it still went by pretty darn quickly. It's so bittersweet..I have learned so so much about Abigail's condition and Abi has made some huge progressions also. We've seen some of her potential a few months out of that last year, and even though we have seen some big setbacks in her progression we know what she is capable of and just have to find the medicine and therapy cocktails to help her reach her full potential, whatever that may be. There is nothing pointing to her not being able to progress or anything that would be a big roadblock (minus the seizures, but that goes without saying.) The Rehab doctor said she shows all the positive signs of improvement and likes the progress that she has seen. When we get back to reality after the new year we will start Abigail on Physical Therapy, Occupational Therapy, and Speech Therapy through Dixie Regional Rehab, as well as have early intervention PT/OT and Eye Therapy still visit us at home about 2x/month each. We will be very busy with those things, but they work! We will also see Rehab every 3-6 months depending on her progress and need. The Rehab doctor told me that as a general guideline if a child is sitting unsupported or unassisted by the age of two, then they expect them to be walking with assistance by the age of 5..that's wonderful news! We will work very hard with Abigail this next year on her sitting up by herself. She is already showing good positive signs of it!
     We can get Abigail to smile really well when she's stimulated in the right way (running with her legs, or swimming with her arms). She smiles with her eyes often too, but I can't wait until she starts smiling and cooing like she was back in July...Speaking of July, I really need to vent - Do you remember when Abigail had to go into the hospital in Vegas because of that prolonged seizure, and we ended up staying in the hospital for 4 days because the doctors there found RTA (renal tube acidosis) and wouldn't let her go until her blood acidity levels came back up to at least 15 (or maybe 16, I don't really remember), but either way. Then we decided to take her off of Topomax because that was the culprit of RTA and then that's when all the digression happened and leads us to where we are today? Well, putting her back on Topomax was not something I wanted to ever talk about during that time because I figured there has to be something else out there that will work just as well without the side effects, but never pushed it out as an option sometime in the future as she maybe got older and could metabolize the medicine better. Well, we are trying a new medicine soon, Potiga, that I am cautiously optimistic about, but am still preparing for the chance that it will not work and asked about Topomax again to our Epileptologist, Dr. Sweney (who is so handsome-not that that is important). What he said next made me SO MAD - not at him, but at the stupid Doctors in Vegas..and if you remember I was already so fed up with all of them there..anyway, after reminding Dr. Sweney that we took Abi off of Topomax because of the RTA this was our conversation (loosely as I don't remember word for word or the exact order) DS = Dr. Sweney Me = me
 D.S: "how bad was the RTA?"
me: "IDK, her levels were at like a 12 or something" ((The levels should be at a 20 - so it was very low))
D.S: "they only found it through lab work? Were there any symptoms [of RTA]?"
me:  "what would the symptoms have been? What are the symptoms of RTA?"
D.S: "Just really lethargic"
me: "NO! She was FANTASTIC - so happy! smiling, cooing, playing with her hands, alert, responsive, etc!"
D.S. *rolls his eyes "asymptomatic RTA is not a big deal - they just found it through lab work?
me: "yeah, she went in because of the seizure but then stayed until her RTA came up" (then I expressed my frustration of how much bicitra they had her on)
D.S. "I've never heard of a doctor using Bicitra for RTA from Topomax - I wouldn't have done anything for asymptomatic RTA"
me: "ugh that makes me so mad because they kept me there for 4 days over something I KNEW we didn't need to be there for! And then she was taking 11mL of Bicitra 3x/day! ugh! So Topomax is something you would try again?
D.S. "definitely, if Potiga doesn't show us what we want then Topomax is totally on the table for me"

I cannot express in words the amount of frustration that has been brought to the surface about that stay in Vegas due to that conversation. Remember how many times they had to stick her? And how many blue spells she went into during each one? And how the doctor wouldn't talk to me or let me listen in on their rounds about Abi? And how the doctor wouldn't answer my questions, and talked down to me? I expressed to him SEVERAL times that I did not think we needed to be there and I wanted to leave but I was stuck until Abi's numbers came up - then learned that it wasn't even that big of a deal! She was ASYMPTOMATIC - it wasn't even affecting her! She was at her greatest and we took her off the only medicine that showed such great effects because this arrogant doctor refused to listen to me or take any of my wishes into account. ugh, ugh, ugh. It just makes me sick to my stomach. The only thing I have to think is there is some sort of reason the sequence of events went as they did. Maybe we still had more to learn about Abi, maybe there was something else deeper that was being affected, maybe continued use would have created a worse situation, maybe we needed to get her off that to realize there were other, better options out there....but maybe not. Topomax was working and I have not seen Abigail back up to the level she was when she was on Topomax back in the summer. It just kills me. But! We will try Potiga and if it works the way we would like it to then in the end it is a wash. Or if it doesn't work the way we want it to we give Topomax another try and see if we get the same results. Maybe it wasn't the Topomax at all - maybe it was just her (doubtful because it was obvious that when she was on the Topomax things were fine and the day after we gave her her last dose of Topomax her seizures came back and that's when the down-slope started) Anyway, rant over, I just had to vent about it. Get University Medical Center out there with the AWFUL reviews. I wish I remembered the doctor's name so I could get his name blacklisted! No, I'm sure some people out there have had a wonderful experience with him, but for Abi and I, he is just NOT the doctor for us. Okay, really, I'm done - back on to happier things....

ABIGAIL IS ONE! She is happy and mostly alert, her head control is coming in and she is getting so big! (Maybe that could be why we needed to get off of Topomax to get a little more meat on her bones!) She is just under 18lbs now and 27.5 (maybe 28.5) inches. She looks healthy and seems to still be progressing. She is eating solids, mostly by bottle, but can take a spoon at times - she used to take the spoon really well so I know we can get her back up to it. I know she's got it all in there somewhere, we just gotta work with her to get it back, I'm not worried. She could still be so much worse than she is now although there is much work to do. She has so many people that love and care for her its fantastic and that alone gives her an advantage, I believe. I'm so blessed to have this little lady given to me, she is wonderful. She honestly is SUCH a good baby. Especially with everything she has to deal with she is just so sweet and easy going and overall happy. Like I've mentioned in a previous post, she is still battling tummy issues, and seizures, which makes her pretty irritable at times - but understandably so! She's amazing. One of her Aunts once talking about how strong she is said "she's all the avengers rolled up into one tiny adorable package" I love that! It's so true. I can't even imagine what she has to go through but she takes it like a champ!  Anyway, I promise I will get pictures posted ASAP.

This is AbiNormal! Love this girl.