Two months have passed and we continue to work with Chloe’s team to gain control over her seizure disorder. It has been difficult to navigate through this process of trial and error of medications, as Chloe has not been reacting well to certain mixtures. For a few weeks, something was making Chloe so ill that she would vomit at least once a day. It was not simple; it was violent and scary. And though she looked relieved and comfortable afterwards, it exhausted her. It became so much of her daily routine that we sat her mostly in a comfortable chair so we would not disturb her equilibrium any more. She would sit with blankets and burp cloths on top of her pretty outfits so we wouldn’t have to change her completely and make her suffer through yet another change or bath. Her seizures seemed to be slightly better though. She did not have such big bursts. They were mainly mild but high in number; there would be a series of about 10-14 jerks. She maintained her therapy regimen and remained fairly calm. Her smile did somewhat return for this period but we soon learned that it was a precursor to her seizures. Some children cry (as we witnessed in the earlier stage), some yell, some giggle, some smile. Her doctor told us that sometimes children see an aura or feel a tickle. How great it felt to see Chloe smile and let out a tiny giggle but seconds later we would be holding her as she seized. It was bittersweet and in the end, we cried more than smiled along side her. A couple times though as we sat and waited for the seizure burst to come, they never surfaced and we sat and held her hand and enjoyed the moment!
We played with new medicine again and adjusted the amounts. We played with the amount of food and the volume of formula versus water she was being fed through her tube. She has not been receiving many calories in a day but thankfully she is still gaining weight. Some days we saw only dry gags and other days it was a mess. We decided last month to try one last medicine before changing her diet completely. It seems like we have been on this constant search for the miracle drug to be the cure all. Life is not that easy though – I ache for the days that a bandaid, a kiss, and maybe some Tylenol would wash away all the bad things in life.
The new medicine arrived a couple weeks ago but having Chloe on three very strong doses of anti-seizure medicine has made her very sleepy and lethargic. Her sleep cycle is even more crazed than before. We are slowly phasing out one medicine but everything together is too much for her. She has some trouble falling asleep at night but has not been waking until very late morning or early afternoon. I wake her, bring her out of the crib, change her, dress her, stretch and massage, move her around but she does not really stir. She is agitated but does not wake. Her eyes are so heavy; you feel her struggle and sense her pain as she attempts to open her eyes even the tiniest bit. You feel so pained for her that you just let her fall back to sleep. When she finally wakes, she is alert and willing to work through her therapy but it tires her out quickly. She is much more floppy these days because of her tiredness. She has slept through so many sessions that she has lost some strength again. Even though we try to move her as much as we can when she is awake, it is not enough to make up for the time she spends asleep. Her seizures are better. They are mild and less in number. Her lethargy scares us though. We continue to work on finding the balance in her medications so that she is more productive during the day.
In a couple weeks, she will return to NY Pres for another EEG. We hope that they will confirm the decrease in her seizure activity. And hopefully we will soon find the right dose of medicine so that we can enjoy Chloe more during the day.
Much love,
Reth, Michelle, Olivia and Chloe
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