Doctor Visits & Staples

Hi everyone. I think this one should be short. :) It's been a long day filled with smiles and tears. We're still emotionally and physically drained and trying to get back into some type of normal routine. However, I think our "normal" has probably shifted for the imediate and indefinite future. Things change, shift, progress forward whether you want them to or not and the choice you have is to make the best of this reality or live in denial. It's hard though and I have no doubt will take everyone in our family some time to adjust.


We visited with a few doctors today. First let me tell you again how strong and amazing Lena is. She went in to have 39 staples removed from her head beginning in one ear and across to the other. She was scared and was hoping she could talk Dr. Demonte into leaving the staples in and just letting them be. She told me that people would just think they were a headband so it wasn't a big deal to leave them there. Pretty crazy, eh? She's really funny sometimes. We weren't sure how many staples there were so she counted them as he took them out. This helped distract her for the majority of the removals. About 2/3 of the way through she decided we should count by tens instead. Aren't those Outley kindergarten teachers great? She did scream and cry as the last 3-4 came out that were stapled in her ear. I imagine they were mighty sensitive but like a trooper she held on and mission accomplished.


Good news... staples are out and she is on her way to recovery and acceptance. Although we haven't directly told her, I'm sure she now knows that her eye is not going to open back up. There's just been too much talk around her for her not to pick up on the conversations. We will be heading back to Texas Children's Hospital to begin meetings with the neuro-opthamologist to discuss rehabilitation and possible ways that she might have surgery to give her some ability to see from her left eye. What I didn't realize until today was that time is crucial. I thought we had time to research and really think through the options but apparently if something isn't done, her brain will "turn off" her vision in that eye because it isn't being utilized. She has vision but without her eyelid open, her brain will adapt to one eye and that vision will be lost.


Other good news... the tumor was benign. I don't know exactly what all the technical terms are for it but basically, it was "really" benign. So although it rated low on the scale for being benign, there is still concern because it was rare in that instead of growing and pushing the nerve to the side, it grew in to the nerve and wrapped itself around it. Besides being in a delicate location of the brain and rare for a child, it grew abnormally as far as tumors go. This is why her 3rd nerve was severed.


Not so good news... we still have to go through genetic testing to determine if Lena has some type of genetic syndrome that would make her likely to have numerous tumors to grow throughout her life. We originally thought this was a blood test but apparently it is much more involved and could take months for results. Uggg... I just can't even think about this one. It's too unbearable. However, without a history of tumors in our families and because of the extremely small chance that a child would develop this type of tumor, it is a moderate to high possibility.


Worse news... Dr. Demonte told us that although he cannot possibly be 100% sure, because a portion of the tumor was left behind, it will probably grow again. We don't know if that might happen in one year, five years or ten years but he seems to think that it will happen at some point. Depending on if, and when, that was to happen, she would either need additonal surgery, radiation, etc. Again... I can't even think about this one much or I would become unable to get through each day.


So you see, we will never get back to "normal". What we have to do now is to adjust to our new "normal" and make it work. We will accept the good news and live in hopes that the other possibilities will not come to fruitation. We will come back together as a family, bringing Kira and Naia home this week, and move forward. We will focus on rehabilitation and/or surgery on the eyelid and wait as well as we can for our first 3 month MRI check-up in hopes that it will show no new growth.


It's been a long day, a long week and a long month but we will keep celebrating the good news, accomplishments and goals. As we do every minute of every day, we appreciate you and love you. If I could, I'd come and hug each of you and tell you personally.


To end on a good note and a smile-
I took Lena to get her first mani/pedi today. She smiled the entire time. The ladies were great with her and painted little flowers on her big toes and thumbs. If you've ever noticed, I'm partial to having those flowers painted on my toes too. :) She loved the experience but as I was getting my eyebrows waxed, told me she didn't want to come back if she ever had to do that! She asked me if I liked having it done and I gave her a crazy Are you kidding me? look. "Of course I don't like it honey but I need it," I replied. She said she never wanted to get it done. Believe me, when the girls get older, they will need someone who can wax kept on retainer! Not only are they already growing unibrows but they are dark like their daddy so it will show... alot!


Tomorrow all the girls and their cousins are going to watch G-Force. We're sticking to the regular movie rather than the 3D since I'm fairly sure it would not work with Lena but I think it will be a fun outing for us all.


I'll keep in touch and let you all know how we're doing. You are always welcome to leave a comment or send us an email at holland_poulsen@hotmail.com


Love you lots- Holi
(For those of you who don't know... my family calls me Holi so I go back & forth when blogging. I didn't want you to think I was developing a multi-personality disorder!) :)