Angelina's progress post surgery and sickness!

Now that my little lady is feeling so much better and enjoying vomit-free life she has been doing so well with all her therapy sessions. Today we had all three starting with Occupational Therapy (fine motor movements). She did very well with disassociating her top from her bottom and really getting good rotation to reach her toys. She is really trying to pick things up with her finger and thumb now. I told her therapist, Ms. Mary, that yesterday we were playing and I told her to give me five and she actually found my hand and gave me a few fives! She did this with both hands separately. It was great! Physical therapy is going good as well. She still doesn't' like to be on her tummy, but sometimes life doesn't care what we like just what we need. She is trying to scoot across the floor though as long as we can keep her from flipping back over on to her back. She has been working on staying upright on her legs and can really control the top portion of her body if we hold on to her waist. She even takes steps to get to toys. All of this is with assistance, but she couldn't do this 6 months ago so this is quite a big change! Speech therapy is good too! She can handle bigger bites with little or no gagging. But even if she does gag she is able to recover without assistance or distraction. That is HUGE!! We are trying to get in 2 "food" session per day at home. She really likes mac-n-cheese and also Alfredo sauce. Apparently she is a savory girl and not a sweet girl! I am trying to get her an appointment with the ortho (leg braces) therapist either through her usual therapy sessions or through her neurologist's office. We need to have her braces looked at and adjusted. She can still wiggle her heel out of where it is supposed to stay and that pretty much makes the braces ineffective and somewhat painful to be in. It's causing a rubbed place on her left big toe that is beginning to be an issue. Hopefully we can get this resolves sooner rather than later. No news on the new chair she is supposed to be getting. That will probably be here mid-summer. Oh the joys of bureaucratic insurance!!! We are also working on adjusting her stroller to be more accommodating so that she doesn't slide down and can keep her hips and pelvis posture correctly. That is a work in progress though. Her PT is trying to keep her out of a wheelchair for as long as possible because you can only get one every 5 years and that leaves little growing room. We'll see how it goes.I think that is all for now. Angelina is doing really great and we couldn't be happier or more proud of her!

Life is much better today

Angelina is feeling so much better now! She went to therapy yesterday and didn't have such a good time but she just got tired much faster than normal. I guess her energy level hasn't totally recovered, but she is not trying to vomit and wretch like before. Now it's only every once in a while. No more seizures either! We will be taking her to have an in-office EEG at the end of April so that we can see if the change in her medication is still okay and keeping her partial seizures at bay.

Angelina has had her first spastic seizure :(

Larry and I knew it would eventually happen but not in the middle of the night. This morning around 2:30 a.m. I went to check on Angelina because she was making weird noises and found her in the middle of a full on spastic seizure. I couldn't see her very well at first because I was half asleep and her night light isn't very bright. Her arms were flexed out stiff as well as her legs, she was breathing erratically and making a weird smacking sound with her mouth. Her eyes were fluttering uncontrollably. I shouted at Larry through the monitor to get up quick - she was seizing! He ran into her room and I asked him to see what time it was so we could tell how long it lasted and to get the phone. I rolled her onto her side and swiped her mouth just in case there was anything in there. He called the on-call neurologist and explained what was happening. Once she stopped twitching she had her eyes closed but still breathing erratically. She had her jaws clenched shut and I was afraid she would bite her tongue or cheek so I pryed her mouth open at the back of her jaw. This made her cry - FINALLY. Larry was still on the phone with the doc when she started crying so this was a big sign of relief. He advised us not to take her to Cook Children's just yet because she would probably be acting fine by that time and we would just sit and wait, but if it happened again to take her in and call him back.Angelina contracted the stomach bug Brady had and yesterday her pediatrician's office advised us to give her Kaopectate and Imodium. She had diarrhea pretty badly but was keeping down the Pedialyte - not that she had a choice. Apparently, when a child has something like this and has a fundo like she does it's not a good idea to give those kinds of medicines because the child can't throw up. So what happened was that her gut just clogged up and the bacteria festered. When a person is seizure prone sickness makes that person more susceptible to seizures. Things I did not know! Anyway, she came to bed with us and about an hour later Brady joined us. So we four slept (sort of) sandwiched on my bed. Poor Larry had to get up at 5:45 am to go to work and needless to say neither of us really got any sleep after that. She is acting okay today and I haven't seen any other seizure activity as of yet. Her neuro nurse says that it very well could happen again maybe even a couple of times before she is well. She called in a prescription for Angelina that will stop the seizures if they happen again. This is a relief to have on hand. I just hope we don't have to use it!