We are a little over month out since Rae’s brain surgery to alleviate or reduce her seizures. She is doing well. All of her stitches are gone, and now we are just watching her hair grow back and her scar to fade. Her hair is not growing fast enough for her, so she just keeps wearing her hats. She does not want anyone to see her hair or her scar. After any type of brain surgery, recovery will be slow. She and her brain get tired easily. We are doing school, but it is slow. We are going at her pace and not pushing her too much. She is good at telling us when it has been too much. We can usually tell the next day. There are some memory deficits, but we are working on recovering those. The doctors told us this is normal. I am having to slow my walking down with her. I am used to walking quickly to get where we are going, but she will remind me that if she goes to fast she gets dizzy. She is also taking stairs carefully still.
One thing she was happy to be doing again is playing her clarinet and going back to band. It does make her a little dizzy, but she is wanting to start practicing again. She is also singing up a storm.
As far as results from the surgery, we will not fully know anything for 6 months or more. They will not start reducing any meds for a while. Things we do know – she is happier (other than normal pre-teen angst), giggles because she thinks Hannah is funny, and eating like crazy. She has not had any seizures since the surgery – PTL! She is able to read longer without stops or “blips” from her brain. Her Lego ability has not been deterred either.
We are so thankful and praise God for how well her recovery is going. We just keep waiting to see how well she continues to improve and will progress.
I know I have been a little absent around here, but I just have not been able to think of what to write about. We have not done anything too exciting. Here is a quick list of what has been going on with us.
1. high school band concert – It was Emily’s first concert with Granville High School. They did an awesome job, and we are looking forward to the next one.
2. last week of this session for the little one’s swimming lessons.
3. hematology appointment for the little one – standard appointment with nothing new to report. numbers are good.
4. pain clinic for Hannah – not too encouraging but I did make her happy with a strawberry & creme frappuccino.
5. Friday night fun with the little one – they big girls were at teen night and we took the little one out for dinner and games. we tried a new food for us – guacamole. i know, we really liked it.
6. Emily and I were back at the farmer’s market. She had been off because of various commitments and I took off for the little one’s birthday. We had a good week. Emily learned that granola sells quick at the market.
7. Hannah was inducted into the National Honor’s Society. She was not sure if she would make, but she was very excited that she did.
I picked up these shoes for a steal this week. They remind me of shoes my dad use to where when I was a kid. It was a sweet memory.
Emily in her dress she was so excited to wear at her band concert.
I thought I would give you a quick update on the little one’s and Hannah’s health.
At the beginning of the summer the little one started on a new medication called Sirolimus to see if we could prolong the time between IVIG treatments and hopefully eliminate them. When I talked to the nurse they told us that they were getting good results with this medicine. We were nervous about trying something new, but we knew she was ready for a break from all the sticks and hospital stays. So far it seems to be working. She is not needing weekly finger sticks unless we think there is a need for it. We do know she is not a therapeutic level yet, but she is on her way. We go back in a week to check to see how it is working.
Her seizures are still pretty much under control as well. She has had 2 episodes since we have gotten back from our trip. We think they happened mostly due to her growing up. Sadly, because of this they had to increase her medication. She is such a trooper with all the medication she is having to take.
Hannah is doing ok as well. It has been a year since we started on the journey to figure out what is going on with pain issues. A year later, we still do not know. She works through her pain daily. She has played through it during her tennis matches. She is also still going to the pain clinic at Children’s. She has good days and really bad days. We pray that God will miraculously intervene and take her pain away. We are not sure why he has chosen her to go through it, but we do hope God will use it in some way. She is doing her best staying active and not letting the pain take over her life.
Our daughter Rae has partial-complex epilepsy. Her diagnosis is a result of 2 strokes she had when she was very young, and she now has seizures related to that damage in her brain. We were not aware of this when adopted her, but we are thankful she is here where she can receive the proper medical care and monitoring. Her seizures are currently under control right now, thankfully.
I guess having a daughter with epilepsy makes me more aware of when people talk about it – especially the media and entertainment industry. I think people out there think all seizures involve shaking and your body being uncontrollable. NO TWO SEIZURES ARE ALIKE. There are songs out there that make fun of this fact of people and who some act during a seizure. Our daughter does not have what they call “tonic/clonic”, and it may be hard to recognize when she is having one. She did have one, but that was when we found out about her strokes. That was a very scary time in our lives, and we are thankful God brought us thru that.
I just wish people would educate themselves sometimes.
Five years ago this month there was a little 3 year old girl found alone. She was wearing green clothes, a pair of jeans, and a pair of red leather shoes. She also had on a backpack with 3 changes … Continue reading →