I am so sorry that we have not been keeping up on this. It is has been a long and fantastic ride being home. We have celebrated our very first holiday home!!!! YAY!! We almost thought that we weren’t going to be able to. She came down with a viral infection the week before Easter and we brought her into the ER on Maundy Thursday. We only had to stay for six hours and then they let us go home. So you can only imagine the excitement that both Paul and I had when she was home for Easter. We weren’t the only ones that were excited either for her being home. Everyone was able to come over to our little apartment and see her in her little dress. I don’t think Paul has had a chance to get the Easter pics up yet, but hopefully tonight he will be able to.
We have our first GI visit today to see how her g-tube is working and make sure that it is not infected and that it is filled properly. We also have many appointments in may for upcoming surgeries that Namine is going to have to have. We meet with Dr. Denni on May 18 to see when she can have her jaw distraction and clef palate repaired. When both of those are done pray really hard because then she will most likely be decanulated, or trac removed. YAY!! The other appointment we have is to meet with Dr. Tommetz to see what and when they can do surgery on Namine’s legs and hips.
She is a very happy little girl. She loves being home and having visitors. We have gone for a couple of walks. She still doesn’t tolerate her HME for very long but she does enjoy the outside. We love to take her out on the balcony and just watch her soak up the sun. She loves it. This past weekend we went outside on the balcony and I had her sitting on the table and I was holding her up and she kept slapping my arm and I finally looked when she rubbed my arm that she was trying to get the shadow off of my arm.
Well it is time to get Namine ready for her appointment so I will try and keep everyone updated. If I don’t just email me and say HEY where are the updates. My email is firstname.lastname@example.org
Well have a fabulously wet Monday and I will talk to you all later. Keep us in your prayers and please check out Jacob Jeremy Shultz’s caringbridge site. There is a little girl that passed away on the 26th. Please keep her family in your thoughts and prayers, along with everyone that we have on our site, Stephanie and Jacob.
We love you all,
Jessica, Paul and Namine Eiche