They're Back ! ! !

Over the past couple of days our little Bree hasn't been the same. She's been in her own little world and at time I couldn't bring her back to ours. I blamed it on the medication, even though she's been on it for 6 months. Yesterday during therapy I was in one room with Paige while Bree was in another. Bree's theapist asked if I could come into the room; Bree wasn't acting right. I took one look at her and eventhough I'd never seen a seizure other than the spasms, in my heart I knew she was having one. She was sitting in her tumble form chair with drool streaming from her mouth. She was moaning with this absent look in her face. Nothing would snap her out of it. She was like that for about 3 minutes before she "woke-up". I called the neuro right away and he told be she was having complex partial seizures and that she's probably had many before this that went unnoticed. We are increasing her Keppra over the next three days to 3ml BID. If that does not work the neuro will discuss adding a second medication. So I will be keeping a close eye on her the next few days.

Neuro visit

The girls had an appointment with their neuro on Wednesday. He was very pleased to see how well they were both doing. We asked when Bree would be able to come off the AED. He told us he wasn't in any hurry because if she had a seizure her development could fall back again. He also agreed with me to hold off on vaccinations until they're at least two years old. He sees no need for an EEG at this time but if we do suspect seizure activity he will request one. He also reminded us that if we would like to be referred to Shands in Gainsville or Miami he would be glad to. He wants us to know that we've done everything we could to diagnose the girls. We also asked about seeing a neuro-opthomologist. He told us there wouldn't be much they could tell us that he hasn't. So the appt. went very well. We will see him again in July.

Both the girls are making progress when it comes to sitting. Paige sat last night for almost two minutes. The therapist are working with them to stop the extension (back-arching). Paige was able to pick up two pegs from a peg board and put them in a bucket. Her hand/eye coordination is really starting to come along. Bree was able to push herself onto all fours with so light pressure on her bottom. While it only last for a few second it's still a milestone to me. They are being evaluted by the PT for their 6 month check. They have been approved for continued services through EI for another 6 months. We're still waiting to hear when they will be receiving their Bottoms-Up seat as well as the shoe inserts.

Water Therapy continues to be going well. Last week the girls were able to relax their arm for the first time, as well as be completely submerged without getting upset. They absolutely love the water and it's fun being involved in the process. Saturdays are becoming our favorite day of the week and I may start Connor with swim lessons. I know he would love it and will learn quickly.

Valentines

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Therapy, therapy, and more therapy!

We've recently added two new forms of therapy to the girls schedule and the girls enjoy both. Here is a list of the therapies they are receiving:

Occupational Therapy - 30 min. a week
Physical Therapy - 30 min. a week
Vision Therapy - 45 min. a week
Water Therapy - 30 min. a week
Massage Therapy - at home

We are currently looking into Music Therapy. I'm not sure if anyone is available in our area; our PT mentioned it in conversation and we're interested. Paige's PT commented that Paige is showing the ability to be sitting already. The challenge is keeping her focused on something long enough to want to sit. They have transition to milk and are slowly adjusting to more solid foods. They are not feed on their own yet. Bree has yet to hold her bottle like Paige. Bree's vision is my main concern. Her eye's are consistantly moving independant from one another. They will see the Opthomologist in a few weeks and I will be asking about a neuro opthomologist referral. They both are suffering from allergies this week and have not slept well. Eating is more difficult because they can not breath through their noses. Lots of fussing and crying!!! We see the ped tomorrow to see what he says.

Making Strides

Much has happened since the holidays. The girls are done with their helmets and will not need to see the neurosurgeon until August. He has requested that Paige have a CT scan done at that time to follow-up on her Metopic Synostosis. As for Bree, she will have a MRI to check on the enlargement of the sub-arachoid space of her brain. They will see their Pediatrician in a week for their 15 month immunizations. The following week they will visit the neurologist for a follow-up visit. We're not sure if he'll request an EEG-the girls have been seizure free for 7 months now! They will also see the Opthomologist to make sure their eyes are healthy despite the CVI. Whether eye patches or glasses will help them right now, we're not sure. These appointments will be the last for some time. They have overcome so much and have finally accomplished some milestones. They are more active and alert; playing with toys and showing a desire to sit. They have transitioned to whole milk and Paige is drinking from a sippy cup. They are eating more solid foods and now have 4 teeth each. Paige seem to be focusing and tracking more and Bree loves to clap and sing. They continue with OT/PT/VT once a week. I'm hoping to get more PT to get them sitting. Their personalities are starting to show now that they're more active. Paige is the dominate one who is always beating up on her sissy, stealing Bree's binky out of her mouth and toys out of her hands. She likes to bite and pinch and enjoys rough play. Bree is very submissive. She takes everything Paige does yet is very snugly and loves to just cuddle instead of playing. It feels great to be so wanted now!