The Schindewolf Squad: Home sweet home

We have officially been home for almost a week now. While it has been so good to be here, it has definitely been an adjustment. Tucker is much more energetic and alert and getting back to his playful self again. However, the feeding tube is taking some getting used to. I have to watch him much more carefully so he's not trying to pull it out. And since he gets his feed through the night, he wakes up a lot more because he can't move as much since he is hooked up to the pump. So needless to say, we are all very tired! I know this is only temporary but in everyday life it sure is challenging.

I have also been trying to get the ball rolling in the therapies tucker will be receiving. However, after one questionable evaluator gave her opinion and documented it on Tucker's file, she has left no room for our insurance to approve a second opinion and I am now having to try to talk to management and to our GI specialist next week to try and undo what she did. When I spoke to the therapist we would actually be working with, she told me she had been working hard on opening a spot for us, but now her hands are tied until we can get this straightened out. She agreed with some of what the evaluator said, as I did as well, but she also agreed that he needed to begin some type of feeding therapy right away. So needless to say, last week was very stressful, I felt like I kept getting knocked down. However, this mommy is not giving up and is determined to get this tube out ASAP! I have decided to do my own research and try to help him myself while we are in limbo. Please pray that we can get all this straightened out as soon as possible! As far as physical therapy, it went really well and pending insurance approval we will begin soon. Due to Tucker's lethargy for such a long period, his muscles are weak so we will work with PT to try and get him going again:) since we have been home he has resumed crawling and pulling up, but only to his knees. He is building up strength little by little! This is most definitely a challenge, but I have to keep reminding myself that God never gives us more than we can handle! And he sure has opened some doors for us through all this and has been working this out in his timing! I just have to remind myself to be patient sometimes:)

As for a diagnosis, we do not have one yet. We will still be working with our specialists starting with GI. We are also still waiting on some test results some that take up to 6 months to get back. So in the mean time, working on feeding and physical abilities are our main priority. They did rule out most of the major "scary things" so we are ok waiting it out now.

I cannot even begin to express how thankful we are for our family and friends. They have all really pulled together to help us out. My sister even put together a meal calendar. When she initially told me, I thought, we don't need that I don't want to bother anyone. However, it has proven to be so helpful and has taken such a load off of me. It frees me from having to go to the grocery store so much and from having to plan and prepare meals. I have been so stressed in trying to get adjusted with all of this and trying to be a good mom and wife, that this has been such a blessing! I cannot thank you all enough!! Not to mention all the help with Tripp and all the emotional support as well! I wish I could personally list each and every one of you here:) we are blessed beyond belief and we will get through this storm in our life!

Just wanted to give an update, sorry it has taken me so long! Thanks again for all your thoughts and prayers, we appreciate them!