Before the three month check up of her second brain surgery Mariana got stung by something and so we went to urgent care to get it checked and of course it was infected.
The next week she was bitten by our dog on the nose and was sent to the ER. Thankfully he didn’t get to her eyes and she didn’t need stitches, just more antibiotics.
Three months after her second brain surgery (the Chiari Malformation surgery) Mariana had another big MRI and was sedated. That day we got to meet with her neural surgeon to discuss her results. Well we hoped that some of the fluid that was stuck in her spine would have evaporated, now that the fluid had room to go where it was supposed to. But nothing had changed, the fluid was still all there.
Nothing had gotten worse and nothing had gotten better. So we are in the unknown about his issue right now. Our concern is that she doesn’t seem to have much arm and leg strength. She is seeing a PT at Children’s for this soon.
Now, we have a new problem because her head has always been above the curve, but kind of following the shape and trajectory of the curve, but now her head circumference is getting larger, it has become a concern and we don’t know why it is happening. She is going to be getting some tests on this to determine what our next plan of action will be.
She is currently going to also be seeing a Speech therapist at Children’s to see what is affecting her speech. Although she has an extremely large vocabulary, it is not always very clear what she is saying. This could be because of many different reasons; if she has an under bite (which she does), the length of the tongue, the roof of the mouth, or if she mostly breaths through her mouth.
Some areas that continue to affect Mariana and that she needs to work hard in, are her fine and gross motor skills.
In the meantime Mommy and Daddy continue to help Mariana through her challenges as much as we can by loving and loving her.
It is hard not to, she is too adorable. We have something very special, the greatest gift of all, we have God by our side, love, support, and so many things to be thankful about.
When we are going through a big challenge though, my husband and I feel helpless. During the hard moments we both secretly feel like throwing up.
My blood pressure always drops and I am the cry baby. I do try not to let Mariana see me, but sometimes I can’t hide it. It is too painful.
It is unbelievable what stress can do to you. With all that has been going on. I am constantly in the hospital myself it seems like. I don’t even get to go as much as I should because I am so focused on Mariana’s health. But, I am trying to be better about that because Mariana needs me to be healthy.
I had migraines for a whole year every single day, often all day. That was miserable. I have had anxiety attacks and blacked out many times. I have had stomach problems. Currently I am getting tested because I have had six huge stomach pain episodes in the past one and a half years that have send me to the ER. I can’t eat many things right now due to these stomach issues and I am taking strong meds that have been effecting my everyday life.
After Mariana has a surgery, we hear bad news, or under these type of stressful situation I will get depressed for about a week at a time. I am not good at being sad so I really fight it. My husband internalizes everything. But, I know inside he is screaming. He has a lot responsibility on his plate. But, amazingly and thankfully he stays calm and is very practical about everything. Under stress we both get a little irritable though, but we fight through it together. My husband has this gift of holding me and making everything better for me. He relieves me of so much stress with his magical healing hug. As crazy as that sounds.
Through it all, Mariana always has a smile on her face.
Sometimes I don’t understand this. My daughter is almost always happy. I can only see her as inspiration to us and to the world. With all her pain, all her struggles. She always laughs, always makes jokes, she loves, she forgives, she shares, she accepts , she doesn’t judge, she is thankful, she has faith, and she fights through everything. She even eats and sleeps great!
I always feel like I have so much to learn from her and I always hope that the world doesn’t ruin her loving and free spirit.
Along with her medical struggles are the social ones. Her face anatomy is a little “different” due to her Pfeiffer Syndrome. Every day I worry that she will be made fun of or that she will be bullied because she has big beautiful eyes. I hate it, I hate it. This kills me inside because she is the most beautiful little girl that I have ever seen.
I am always on the radar, wishing I could prevent everything, fighting for her, fighting with her, but yet remaining calm and trying to make the situation as positive as I can. When inside I am hurting and crying. It is a constant struggle.
There is something I really want to say about this: Please parents, educate your children about the beauty of “different”.
There are so many movies, for example, that you can use as an opportunity to educate your children: Finding Nemo, Dumbo, Mulan, Pocahonta… For example these are things I tell Mariana when we watch Finding Nemo: “Look Nemo has a small fin and a big fin and that is okay; he became a hero. He was so brave and accomplished so much. We Love Nemo.”
Buy your kids dolls or toys that are of “different” races. For example: Our daughter has African dolls and loves them. We encourage her to love all races and we tell her how beautiful it is.
We have a book that Mariana has quoted randomly a couple of times about a bunny. She says “Mama we are all different colors and we are all beautiful”.
Kids notice and pick up on things, more than we think. Also, introduce your kids to as many cultures as possible. Literally immerse yourself in other cultures.
We try and hangout with and attend events from other cultures. We recently went to a big Indian celebration and joined in their joyful dancing. It was super fun and people were so welcoming. We expose Mariana to food from all over the world. Turkish, Korean, Indian, Chinese, Colombian… Any opportunity is a great opportunity. She eats everything and we work hard on it. These are just some suggestions, but there are many other examples of ways to help our children love diversity.
I think that life for Mariana will always be challenging for many of the reasons I have and haven’t explained; kids with Hydrocephalus often suffer from chronic headaches, they miss school for urgent medical reasons, and kids with Pfeiffer Syndrome have a 50% chance of passing this gene to their children, etc…
I am here telling you Mariana’s story to educate you, to spread awareness on Hydrocephalus and Pfeiffer Syndrome.
To tell you how it has affected our lives and to show you a glimpse of what other families are going through, who have similar struggles and who carry similar and heavy crosses.
Hydrocephalus is twice as common as Down Syndrome and comparatively, it receives 1/19th of the federal funding. One surgery every 15 seconds in performed in the US for Hydrocephalus. We need a new shunt so the kids with Hydrocephalus don’t have to have so many intrusive brain surgeries. It the past 25 years not much progress with has been made.
We need to move forward, this is not okay. With Pfeiffer Syndrome we need to find some answers. We need the basics: a Natural History Study; Medical Trials; Research; Awareness; Innovations. We need to fight for a cure.
Lastly, “May God protect and cure all the little children that are suffering. May he give them strength from his love, and comfort from the cross he is helping them carry, and may he give peace to the hearts who hurt because of the love they have for these children… Amen”