Maddie's fight

Our precious Maddie is 20 months old and has been fighting rsv, pnuemonia and not gaining a lot of weight since birth. Mom (Crystal Haubert) knew something wasn't right since day 1 and because she wasn't at the failure to thrive stage at 3 months of age the Dr never thought anything was actually wrong. They just kept treating the lungs and specialist couldn't find any genetic defects. Well finally they took heed when Maddie began losing weight. She was hospitalized in McClane's children's hospital in Temple in September, 2016 being treated for pneumonia. They also found the cause for her pneumonia. She's aspirating her food into the lungs. They put her on a feeding tube and soon she began asprirating again. When they were performing the acid reflux surgery they discovered she not only had malrotation of her intestines but Annular pancreas as well. They performed Ladd procedure with an Appendectomy.  They moved the tube into her lower intestine with hopes her body can begin healing and gaining weight. In Dec she was lifeflighted to Cooks in Respitory Failure. After a 3 week stay they sent her home on oxygen therapy. They sent her home with a "permanent" gi button that will remain in place for a couple of months as they want nothing by mouth until she's fully able to keep from asprirating As of this Dec 2017 she still has the button and will have it for an undetermined length of time.  She had a vascular ring surgery in March and some genetic testing was performed. The first test showed nothing remarkable. The second testing showed a chromosome defect but nothing remarkable. We finally got the WholeExrome genetic testing done and low and behold our Angel was lifeflighted Thanksgiving eve (2017) to McLanes with respitory issues and we found out that yet again our baby girl had not only RSV but double pnuemonia. We were given the choice of Comfort care or a trachea. We knew it was a possibility for 2018 but the team of drs said that her body can't handle much more. so we got her over the hump and she now has a trachea. We were also given the results of the Genetics test which showed that she has the POGZ gene mutation. And our girl is writing her own history. There are only 40 cases reported worldwide with varying  degrees of severity some children have autism, some epilepsy and some intellectual disablities. Where this road will take us we are not certain but we know this new chapter in our life will be interesting. While she's there the bills are mounting at home as well as wear and tear on their vehicle. And mom needs food as the hospital doesn't provide parents plates. Plus when they come home she will be needing supplies for the equipment they are sending them home with. Maddie can't walk at this point. She can't crawl. They are wanting to get her a wheelchair that will carry the oxygen and the ventilator. The carpet in their house has to go. We would like to put wood tiles down to help with the ease of manuvering the equipment and Maddie. We will now have 24 hour nursing. There will be another sleep study in January to see how the trachea is doing and if she will need CPAP therapy and if oxygen will be required. She will be sent home on a ventilator to help us help her during the rough patches of breathing difficulties. Drs have now said that O2 therapy will be required with CPAP/VENT therapies but as to what degree the test in January will tell.T here is no longer talk of normal feeding for the time being. As soon as she recovers from this mess they will have to do an intestional bypass as the pancreas is now causing a blockage that causes her to throw up and put her right back in the hospital. A recent MRI showed volume loss to her brain, She also has Microcephaly, Hypotonia and vision problems. Any donation will be helpful to keep this family moving.