Our Day of Celebrating

FaceBook Status Today:

"One year ago I was so sick and in so much pain from a migraine I called Robert home to get me to my obs office. They gave me something to help with the pain and said if it didn't get better to go to the ER. To me the most important thing was to see my girls and know that they were okay. I saw there tiny bodies and their strong heartbeats and I felt a little better. From the looks on the the tech and OBs face I knew things were not looking good but I continued to hope, I didn't want this to be the last time I saw my girls alive. Who knew that literally seven days later Natalia would be gone.

Natalia my sweet baby girl, not a day goes by that I don't wonder if there was anything I could have done to keep you here. You and your sister were a lifetime wish come true. Now here we stand with her and you are just out our reach. You gave me so much and I will never forget you. Someday we will meet again but till that day May 29th will be a small celebration of your brief life and what you mean to us."

 

Today we choose to celebrate Natalia's short life because no matter how brief it was she brought immense joy and simply put she matters.  I will not discuss what came after this day yet, that is for my reflection post next week. Today I am going to post some important moments, happy moments none of the sad ones.

1) The moment we confirmed I was pregnant. We didn't know it was twins but we knew that I started having symptoms at about 3wks!

2) First Ultrasound! How amazing, how shocking to find out we were carrying identical twins. Our Froggy A and Froggy B

3) Seeing their actual little faces and hands. Seeing those tiny little beings was so amazing.

4) Watching how the little babies almost always were laying on top of each other or head to head.

5) Finding out they were girls! Oh my did that make my day. 

6) Getting to the end of the pregnancy and still being able to hold Natalia. I held my baby girl. 

Next week will be a hard one but we will get through.

 

A little Update

At Aaliyah's six month appointment we found out while she had gained some weight it wasn't enough. We started to make some changes that are helping her but it still is not enough. After much thought, research, and talking to other parents and doctors we have decided to go ahead with a surgery to put in a G-tube. It will be there to supplement her feeding and no we do not know for how long. It could be months or years. Only time will tell. As of now the surgery is set for June 14.

I few weeks ago I witnessed a small episode, then a brief one the next day. I caught on film. That Friday she proceeded to have several in a short time. This time her therapist was there, and we agreed she needed to be seen. Aaliyah saw her pediatrician that afternoon and she immediately put a call in to her neurologist. Within an hour we had an EEG scheduled for that Monday. When we went in foe the results we found out Aaliyah is having “infantile spasms”, a mild form of seizures that if left untreated could become full blown seizures. She started a medicine that is working and we will be doing four more weeks. 


Yesterday she had another EEG, it  was better but not normal which is not bad. Okay so we continue the crappy med that makes her a demon spawn from Tartarus. Seriously can not put her down at all. It causes insomnia and a whole host of other crazy things. Two weeks and we start to taper it off. Two weeks after that we go back in.

She will be starting an actual seizure medication for the foreseeable future. In part because something is going on and also as a kind of buffer because she is at a very high risk for bigger ones. The medication also helps with the infantile spasms.

Now we are waiting for approval on a longer EEG that is overnight in the hospital. We could wait but both the doctor, Robert and I agree that the 45min scan can only show so much. I also feel that considering we know she is having mild seizures I would like to have this on file, if they ever get worse. Give us a base line for what she is like. 

For now that is all. Next month is crazy time for us so we shall see how the blogging goes.

The Little Things You Take For Granted

I have several blogs that are sitting there started but not finished. I am excited about them but the other day something happened and it made me cry. A cry a long time coming and needed.

I had cried when I first heard the diagnosis but it was more out of shock, the doctors were very cut and dry at the time. This was different, this was for what my daughter can't do. I am not talking the distant future I am talking about right now. Yes every kid develops differently but keep in mind you KNOW they will do it at some point. I don't have that "guarantee", I have faith that she will do it at some point.

So what happened that made me cry? I was laying on the couch with her, she was sleeping on  my chest. Her hands flat against me and I lifted it to kiss her palm. Than it hit me...she has never once lifted her hand to touch my face. Never once lifted her arms for me to pick her up. We have only heard her laugh the one time. She smiles but it can go days before we see it again.

I am happy that if you sit her up, she can hold it for a little bit. I am happy that she will try to stand. I am happy she is trying to army crawl. I am happy when sometimes if we are holding her and talking to someone else if we turn and look at her, a smile lights up her face with pure joy. I am happy she can roll, mostly from tummy to back but hey she can do it. Most of all I am happy we have her. her progress may be slow but she doesn't give up and she will get there at her own pace.

So please, don't feel scared your child hasn't it made it to that point, be happy that they are healthy and happy. At some point they will make it to where they need to be.

ETA: I never even touched that I will never have these moments with Natalia.