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.
Here on World Adoption Day I thought I could give you a little update on the little. This summer we spent a week in the hospital to see if Rae would be a candidate for epilepsy surgery. This was scary because, how do you decided to allow your child to have brain surgery. In addition, to the stay in the hospital, there were many scans and testing. As the doctor called it – “million dollar testing”. After all the testing was done, we had to wait for results.
All of Rae’s info for testing was presented before a room of doctors to see if she could have the surgery. There were so many questions. Would we? Would we not? How do you make that decision if it was left to us?
We chose to seek the one who could best help us make the decision – GOD! We put our faith in Him. My prayer was that the decision would be black or white – yes or no – simple. God has gotten us through all the ups and downs of all of Rae’s needs – why would He not be here for this decision.
It was time to meet with the doctors to see what their recommendations where. God came thru – after meeting with her doctor the decision – as hard as it was – it was basically made for us. We said yes to the surgery. Are we happy our daughter has to have surgery, no, but it is the best for her. Is she happy, no, but she knows it will either eliminate or greatly reduce her seizures. The surgery is to help save her brain function and to improve her memory. As she has gotten older, her seizures have increased in amount and frequency. As we discovered, each seizure was actually doing damage to her already damaged brain.
The surgery will be done at Nationwide Children’s Hospital next month. We are nervous, but we have so placed our faith in Christ. Whatever happen, He is sovereign and will get us through it all. Our prayer is that God will be glorified through this.
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.
Couple of weeks ago, the little one had a several appointments with Children’s – speech, neuro, and ophthalmologist. We rotate thru these doctors about every 3-6 months, so they fall usually within several days of each other. It makes for … Continue reading →
Our Monday was to start like any other week. We had several appointments, church events, tennis games,and to be capped of at the end with our daughter’s drama performance on Friday and Saturday. Here it is Wednesday, and I am sitting in a hospital room with Rae. Monday morning Rae started having a seizure that truly scared us, and we raced off to our local ER. The ER was great and started working on her immediately to get the seizing to stop. They started some testing to get some early results and decide if we were to be transported to Children’s. None of the early testing showed anything, but her CT showed something, so we were definitely being sent to Columbus. A ride in the mobile ICU is not a thing any parent wants to experience. Sitting alone praying for your child is about all you can do. We are very thankful for our friend Rochelle who came and picked up our girls. Their family has been a great help these last couple of days.
We have no record of our daughter having seizures before or knowing she had 2 previous strokes. We can only speculate that these happened before she entered the orphanage – we just don’t know. There is no one to be angry at, but all we can to is move forward and give her the best medical care we can. God knew all that was going to happen, and we can just trust His plan. While we are scared and very concerned, we are so blessed by our friends and family literally all over the world are praying for us. We are truly thankful for all your messages and emails. She is one blessed little girl.
There are still many questions to be asked and tests to be done to find out the answers. We are thankful for the doctors that are working diligently to take care of her and to help her to find out what is causing this. We are thankful that no infection has shown up in the cultures so far. We pray that we are moving closer to find out what caused this and to even see if it related to her blood disorder. What ever it is, it is all of God’s plan and He knows it all. We must trust His wisdom. I will chose to be thankful.
THURSDAY UPDATE – We were able to go home late Wednesday. She is doing well on her new medicine. We were told she could possible be mean while taking it, but we think it has given her the giggles which we will definitely take over the other. We are loving these belly laughs! Pray there are no more seizures, and we can get more answers.