Hi Everyone,

It’s been quite a while since our last post.  Maddie had an electroencephalogram test (EEG) and this time, her twitches have been formally diagnosed as seizures.  Although they weren’t called seizures previously, we treated them as such and the neurologist had explained that her previous EEG might not have picked them up as such if they originated deep inside the brain stem.  So although it’s not good news, it’s not surprising news.  Results aside, Maddie was absolutely on her best behavior!  For an EEG, electrodes need to be placed all around the scalp to pick up electric brain waves.  See pictures below.  The head bandage is just for covering up the electrodes so she doesn’t grab at them.

Going in, I was concerned since Maddie really dislikes me fussing with her hair.  However, maybe it was the different environment or the fact that we had an experienced and fast technician (hooray!), but she barely made a fuss.  I just had to steady her head for a little bit, but very little struggle!!!  Such a proud mama 🙂  After the results of the EEG, the neurologist wanted to adjust her anti-seizures medication to see if we can be rid of them, but the increase in medication seemed to have made them worse.

In the past few weeks, we’ve continued to fight Maddie’s worsening seizures and have had to adjust (up and down) dosages of her anti-seizure medication as well as add an additional medication into the mix.  We just finished our second week of taking both medications and haven’t seen any significant change since adding the second medication.  I spoke to the neurologist yesterday and he’s decided to wean her off the second medication and then slowly start another medication (but still on top of her first medication).  Since it’s a slow increase in dosage for the new medication, she won’t be at the recommended dose for another two weeks, so we’ll have to wait to see how it goes.

Along with her seizures come some difficult days where she’s extremely drowsy and keeps twitching so much that it’s nearly impossible to practice any therapy.  I think a part of the drowsiness is a side effect from the medication so I’m glad to be off of the second medication.  We’re also still thankful she hasn’t had any seizures where we’ve felt medically unsafe (most are pretty short in length, just a few seconds).  Please pray for wisdom for the neurologist and strength for everyone as we try to get these seizures under control!

Unfortunately, due to Maddie’s seizures, the first thing to go seems to be vision.  She hasn’t had any major improvements recently and it’s been hard to get her to smile while looking.  However, we’ve seen some other improvements, a major one being more purposeful movement with her right arm/hand.  It used to just “hang out” while her left hand plays with toys and self-feeds.  Although we’re far from that point, we’re starting to see some of the early movements that her left hand showed before becoming more purposeful.  For example, Maddie is not a fan of having her hands held.  When we put our hands on her left hand, she immediately pulls away.  You can’t hold her hand and put a toy in it, you have to have the toy close by and let her hand find it.  Same thing with food (e.g., crackers)… she will pull away if you try to hold her left hand and put something in her palm.  However, you could do whatever to her right hand and there would be no reaction.  Just this past weekend however, I put my hand on her right hand after dinner one evening and she pulled away!  I thought maybe it was a coincidence, but I tried again and she did it again!!  Who would’ve thought a mother would be so happy that her child didn’t want to hold her hand 🙂

Maddie has continued to practice her sitting and is still gaining strength in her neck and core.  She’s getting better at bearing weight on her right arm/hand (it used to be limp and just collapse) while sitting and holding her head in midline for longer periods of time.  See below!

Her standing hasn’t been great since the seizures got worse, but below are some pictures before then.  Let’s hope we see some improvement in the seizures so she can stay up for longer periods of time without collapsing.

As you can see, she still loves sucking her thumb/fingers, so we take advantage and use them as motivation 🙂

As the weather has improved, we’ve also been outside for some walking in her gait trainer!  Below are pictures from the first time taking it outside!

Bill found Maddie a “utensil” that she can use without help and without causing a huge mess.  The handle is the perfect thickness for her to grab ahold of, which is why it works out so well.  This contraption is typically used to introduce purees to babies, but since Maddie has graduated from purees, I’ve been putting fruits that I’m too scared to give her on their own (e.g., oranges) inside.  That way she can enjoy the taste without having to worry about choking on the skin!  As you can see, she loves it and is very proud of herself!

As described in the last post, we were in the process of applying for special education preschool services for Maddie.  They held Maddie’s eligibility meeting, at which she was found eligible (as expected).  We then had our individualized education planning (IEP) meeting last Friday.  The IEP team recommended non-categorical classroom with additionally physical therapy, occupational therapy and vision therapy services.  Even though they recommended non-categorical classroom placement, we can still apply for homebound services with a doctor’s note on why Maddie can’t attend due to medical reasons.  This process won’t be until August though, so for now, Maddie is at least in the school system and we’re set-up to apply in late summer.  We will continue with Fairfax County’s Early Intervention services until Maddie’s third birthday in mid-August and then apply for homebound services.  If everything goes smoothly, she’ll hopefully be able to start at-home therapy right after she ages out of the county service with very little gap!  We’re lucky her birthday timing is so ideal!

Below are some recent pictures!

Her long hair now…

Her smiles 🙂

St Patrick’s Day…

Easter weekend (twins with Abby)!

Sleeping twins on a long car ride home…

Mother’s day weekend!

(and no she did not blink… she actually slept through all the picture taking!)

Her little feet!!!