Abi cut 4 teeth at the beginning of the month. They all came in the first weekend in June. Her top front tooth came in, following with a bottom front tooth. And then the next day, another top front was in, along with the other bottom front. Now she is working on 2 more top teeth. Pretty soon she'll have a mouthful of TEETH!
We took Abi to see Dr. L, her Neurologist the second week in June. She wasn't supposed to have an appointment, but the first Sunday, Abi had a horrible day. She had had 6 seizures by 11 am that morning & then 1 later in the evening. This concerned Dave & I. Normally she was only having 2-3 a day. We got her into the Dr. that following Tuesday because she still wasn't doing any better. We had another EEG performed and Dr. L explained to us what was going on with our little Miss. The
good news is her Infantile Spasms are under control. They didn't show up on the EEG. The Dr. believes that the Vigabatrin is doing its job, and that is what is controlling her Infantile Spams. We are so excited for this news! The
bad news is that she is experiencing what is called Partial Complex Seizures. We knew that her 'spells' had changed and kind of felt like they were the seizures instead of the spasms. So he increased her dose on the Topamax & we hope that it will soon control her seizures. So far, it has helped, but she is still having about 1 or 2 a day.
As for her development, she is doing awesome!!! She started saying "Da-Da" on Fathers Day. It's the cutest thing ever!!! Along with her vocalizing more, she also has almost accomplished rolling. She can roll to her side, almost belly, but can't figure out to move her arm.
Her Physical Therapy is going well. She had PT a few weeks ago, and it was very informative. We got a new PT & she gave us some more exercises to do with her & stretches for her muscles. She is a little concerned that Abi might have what is called
Torticollis <--click to read about). So we are doing stretches with her to get her neck muscles working properly. Also she thinks she is aspirating when she eats. We have to prop her up to where she is sitting fully up while feeding her a bottle and feeding her solids. Also we prop her while she sleeps. We will be having a Occupational Therapist come out to see her and evaluate her. Hopefully they'll help her with her feedings and figure out what we need to do so this no longer happens. She most likely will have a swallow test to see if she is for sure aspirating. It doesn't come as a surprise to us as I thought it would, & I think it's because these girls with Aicardi Syndrome are known for aspirating. We just want to get it under control so she doesn't get all that fluid in her lungs and cause her to get sick. That is one of the reasons her condition is fatal, because of the aspirating part. So we are doing all that we can do to help her to not choke while she eats or sleeps.
Abi is such a joy in our home. We are focusing more and more on the joys of Abi daily, instead of focusing on the uncertainty of tomorrow. We are living in the moment. Enjoying every day together. It's amazing to me how the little things I
used to take for granted, before Abigayle, are now so precious to me! We KNOW the Lord is with us! We have been truly blessed by this sweet angel in our home. We feel our Saviors love all the time!!! I do not know where we would be if we didn't have the gospel in our lives. His love, along with everyone else has brought us so much peace and comfort! We feel your prayers. Thank you all for continuing to keep our little Abi in your prayers. She is a miracle!
Just a quick update on Abi. She is doing FANTASTIC! We had a visit with her Neurologist last week & he couldn't stop telling us what an amazing little girl we have! She is doing incredibly well! She is vocalizing more. She says: "Dada" & "Hi", & also waves!!! She also is doing great developmentally. She regressed a little after I posted the videos of her saying Dada & rolling, but she is back to doing those things & also doing more. She is so vocal. She wakes us up very early in the morning by just jabbering away. I think she has found her voice!!! She also is scooting around on her back by pushing off with her feet. She went a whopping 5 days seizure FREE!!! But now is down to 1 every other day. Hopefully this last increase of her Vigabatrin will stop her seizures all together. She is doing well in her Physical Therapy & we couldn't thank the Up-To-3 Program enough. We also had a Swallow Study done to see if Abi is aspirating. The news: She's not!!!! Whew!!! She has a really bad case of acid reflux. But we're not out of the woods yet. We still need to watch her & if there are any suspicions of her aspirating, then to let them know. We go in for a follow up in 6 months.
Abi cut 4 teeth at the beginning of the month. They all came in the first weekend in June. Her top front tooth came in, following with a bottom front tooth. And then the next day, another top front was in, along with the other bottom front. Now she is working on 2 more top teeth. Pretty soon she'll have a mouthful of TEETH!
Abi is doing well...
Things are looking up for her. She has been on the Vigabatrin for almost a month now. Although she is still having spasms, we have seen a great improvement in her developing skills. She now can sit up ON HER OWN; She is progressing well with pushing up on her arms while she is on her belly; she is vocalizing A LOT now... infact, the other night we swear she said, "DaDa"...It was so clear and so cute!!! She is also grabbing for things more now, and seems to be using her left side a little bit more than she used to. It's like she is a new person! She is so happy. The fog has been lifted for her. She has had 2 episodes where she has seized. They don't last long, but it is a concern for us. With the medicine we are trying to get her spasms/seizures under control. We had a visit with her Neurologist & Ophthalmologist last week and her Neurologist performed another EEG on her to see what is going on with her spasms/seizures. I will be finding out the results to the test today, and will post later about
them. She is still on the Topamax and we are working up to a new dosage of 250mg on Saturday with her Vigabatrin. If we DO NOT see improvement, then we will have to go back to the Dr. sooner than July (our next appointment) to determine what else we can do for her. Her eyesight is still great! Since she is on the Vigabatrin we have to see the Ophthalmologist every 3 months, which is fine by us. She tracks well and seems to have no problems with her vision. We are still taking her condition one day at a time, but with each day, it gets easier. She has been such a blessing and we do feel like miracles have happened for her. We are enjoying every moment of every day with our girls and wouldn't have it any other way.
