Clara was then very happy. She would sit and play just about anywhere. She smiled all the time. andloved her play mat. You hardly could tell she was having spasms then, and how very sick she was with them.
It has been almost three months since they started in December. Zonegran, and Sabril didn't work. She is still taken both however with the prednisone. This photo bleow was taken after a month on the sabril. Which left her very tired. She slept all day and all night, and wouldn't eat very much. This was also taken a week or just days before we started the steroids. She has probably not been back in the this purple adaptive chair. She screams when she gets near it.
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Not a lot of smiles here. This is when we really begin to see a change in her personality. After a week on the full dose of Sabril the spasms started to come back more frequently. We thought we were getting more control of them, but no such luck.
This photo above was taken on a Friday, when there was ice and we were out of school. Madeline was with us, and we brought Clara back to Chapel Hill to discuss what was next. This day we started high dose prednisone. This appointment was very emotional for me. This is when I begin to fear that they did not know how to help her.
We continued the 40mg dose for one week, and although the seizures had decreased to one or two clusters a day, the second week we increased her dose to 60mg a day, Highest dose possible.
Day 10 was the first day we noticed no spasms. It has been a week, and we haven't see any since.
Prednisone has taken away my little Clara. It breaks my heart day after day to give it to her, knowing how ti makes her feel.
In the beginning, she slept a lot and never wanted to eat. I feared she would become dehydrated, after days of not eating more than 500mls of formula a day. She also about the time had an ear infection, and had to take amoxicillan which probably did a number on her belly.
Her CP is a thousand times worse. She no longer likes to sit in anything but our lap and never plays. Being on her mat, she acts as though she is in pain, she screams, and arches backward. This is her CP.
When she is sitting in our lap her head stays back too. As you see Clara with her nurse Christina. We recently have increased her bacoflen (CP drug), to help with this. This is a slow 3 week increase, and too be honest we haven't seen a change yet with this.
These past several weeks, have been extremely hard. Physically hard and emotionally. She has to be held all day, except at night when she sleeps in her crib. Last Friday she has been out of control hungry, doubling her previous ml totals for the day. Which hey actually is a good thing for her. Her bottle is about the only thing that will take the edge off and calm her fits other than being held and rocked.
Thank God for wonderful nurses to help us everyday and night. They show up, and never let us down. I couldn't imagine Jason and I doing this alone. I know alot of parents do, but we also have the trach. So it all would be to much for the two of us.
Grandparents have been wonderful to come over and hold her, especially when I am alone with both girls and on weekends. Those extra snuggles are right up their alley.
(I finally got a smile two days ago while Me Me was holding her. First in days. Check out those puffy cheeks. Steriod jaws. )
Day 18, today we traveled back to UNC where we got the word to begin weaning the prednisone and not to continue the 60mg dose until Saturday. This because of these side effects and Clara's risk of infection. The wean will take 3 weeks, and we should hope to see the side effects go away during that time. We hope to have our precious Clara back very soon and remain seizure free.
So glad to see her with Jason smiling. It only lasted a second, but totally worth it. In this short time at UNC she drank two 6 ounce bottles within two hours. She was Hangry!!
This photo was actually a smile/cry face!
...and I am done!
This passy she never takes out of her mouth, except to drink. Check out her puffy cheeks.
I hope in three weeks, after the wean we will still have wonderful news to report of no seizures. Jason and I just don't know what to expect. We continue to hope for the very best.
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