Some Updates

We have had a busy last couple of weeks with appointments and therapy. I took Tessa to Hearts for Hearing therapy 2 weeks ago on Tuesday the 13th, and after that we went to get her new DAFOS fitted (still waiting for them to be delivered). Then on that Wednesday we had her 6 month follow up with her ophthalmologist, Thursday was PT, and then Friday the 16th was her 6 month follow up with her neurologist.

Ophthalmology

Tessa's doctor said that everything was looking really good with Tessa's eyes! She has made the kind of improvements he had hoped for with her 6 months of growth. Her right eye seems to be getting stronger and stronger on it's own, so still no need for patching or surgery at this point in time. She will probably always have a tendency to have crossing and some shakiness with her eyes, but it isn't all that noticeable, and could still be something that improves with time. We will continue to check up with her doctor every 6 months to make sure she continues making progress.

Neurology/Seizures
Darin and I had talked about discussion points a few weeks before Tessa's neurology appointment and were excited that there really weren't any. The last time we had increased Tessa's seizure medicine was last November...from 0.5 mL to 0.75 mL three times a day. At our last check up in March, Tessa had been doing well on the medicine and hadn't gained much weight, so there wasn't a need to increase her dosage. Tessa finally hit 20 lbs and 30 inches about 3 weeks ago, so she is definitely a much bigger girl than she was last November. And unfortunately, she had her her first noticeable seizure...ironically enough...the same week as her neurology follow up.

Tessa was working really hard at therapy on Tuesday the 13th. She was sitting in a new highchair at therapy and had needed some adjusting to her posture off and on throughout the session. Near the end there was a moment where her head fell forward, then she threw it up and back and her eyes were kinda of rolled back and her eyelids were fluttering. Tami was immediately concerend and asked if I thought she had just had a seizure...and I said no (potentially the under-reaction of the year). We took the highchair tray off and I tried to get Tessa's attention and get her to regroup. She was a little out of it for a bit, but the 'episode' itself seemed to only last like 10-15 seconds. I told Tami I thought maybe she fainted. She had been sitting in a fairly slumped position for some of the session, and I thought maybe she just wasn't getting good oxygen in that position. So, Thursday rolls around and I asked Melody at PT about her thoughts on what might have happened during that 'episode' at HforH. Well, after her thoughts, "duh" came to mind, since she said if Tessa had fainted, her head would have stayed down...it wouldn't have shot up. It seemed to her, from my description, that Tessa more than likely had a seizure. So, needless to say our discussion points changed...ever so slightly...for Friday's neurology appointment.

It's like one of my sister's said "at least there is an easy fix for it, right?"...and that is right! We have increased Tessa's medicine from 0.75 to 1 mL three times a day. We aren't sure if that is enough of an increase yet, so we are still keeping an eye out for more potential seizures to see if we might should increase a bit more. When Tessa was diagnosed last year and made such a profound improvement after starting on her Trileptal, the doctor's couldn't help but question if some of her crying spells for the first 3 months of her life might not have been seizures all along. The 'episode' like seizures have been very few, but Tessa has had a few unusual crying spells recently that have left us questioning. It is definitely a difficult thing to determine, but we are doing our best and are so grateful to have found a medicine that she responds to so well.

Power Mobility Study

Lorrie is coming to the house this Friday afternoon at 3:00 for Tessa's power mobility evaluation. We should know pretty soon after Friday's appointment whether or not Tessa will be in the group that gets a chair for the next year. It would be fabulous news to find out she gets the opportunity to use a chair! We will let everyone know just as soon as we do!

Equipment Delivered

Yesterday was a big day...Tessa's Manatee Bath Chair and Rabbit Stander were finally delivered! It's only been 6 months since we began the process! Unfortunately...it didn't come with the level of excitement we had hoped...they ordered the wrong size stander :( Tessa needs the size 1 stander...and yesterday they delivered a size 2. I was really confused when I got home and saw the technician working on the new on in the garage. The size 1 only comes in a red frame...the one he was working on was a blueish/purple...which is what color the size 2 comes in. Frustrating to say the least...but the good news is that we still have the demo that we have been lucky enough to have for the last several months. So, as long as we can hang onto it, hopefully they can get all of this corrected and Tessa will be in her very own Rabbit stander soon!

In General

Tessa seems to be going through a lot of changes lately. The main side effect of Tessa's seizure medicine is drowsiness, and we do feel like we have seen her deal with this over the last couple weeks. She has had some pretty mellow moments. She has also been going through some crying spells that we can't quite explain. Which we know isn't uncommon with any young child...but her lows can just be really low sometimes and we feel helpless. I really hope that she just tends to overreact a bit (like her mama) and that there isn't anything serious going on, but her overall mood has been consistently down (especially in the evenings) over the last week. We are so thankful that she is growing and changing so much, but with that has come the need to monitor potential seizure activity. We are really ready to have our happy little miss back and hopefully we'll get the dosage of her medicine figured out soon and Tessa will get to feeling a lot better.

It has taken me a week to get this posted ~ its organization is lacking in elegance...but I figure it's better than nothing at this point ;)

~Whitney